dialysis case study nursing

Dialysis: Overview and Nursing Case Study for Nursing School and NCLEX Prep

What are you struggling with in nursing school?

NURSING.com is the BEST place to learn nursing. With over 2,000+ clear, concise, and visual lessons, there is something for you!

Learning about Dialysis

Dialysis is a critical medical procedure that plays a vital role in the lives of individuals with compromised kidney function. When the kidneys are unable to effectively filter waste and excess fluids from the blood, dialysis steps in as a lifeline.

This procedure replicates the essential functions of healthy kidneys by purifying the blood, removing toxins, and regulating electrolyte levels. Dialysis helps maintain fluid balance and prevents the buildup of harmful substances that could lead to serious health complications.

For those with end-stage renal disease or advanced chronic kidney disease, dialysis becomes a routine necessity. Whether it's hemodialysis, where blood is cleansed using a machine, or peritoneal dialysis, which occurs internally using the abdomen's lining, this procedure significantly improves the quality of life for patients, granting them more time and vitality while they navigate their medical journey

My uncle underwent dialysis three times a week due to end-stage renal disease. Something he has been battling for years already. But witnessing his dedication and resilience in facing the challenges of treatment was inspiring. Despite the physical and emotional toll, he remained positive, cherishing every moment with family. His journey taught me the importance of empathy and compassion in providing support to individuals undergoing dialysis. 

Overview on Dialysis

General: 1. Hemodialysis    a. The purpose is to clear waste and toxins (urea, creatinine, uric acid) from the blood and regulates electrolytes    b. Complications        i. Hypotension / Hypovolemic Shock – pulling off 1-4 L of fluid in 2-4 hours       ii. Air embolus      iii. Electrolyte Imbalance      iv. Sepsis       v. Hemorrhage from site   c. Medication Precautions       i. HOLD antihypertensives and medications that might drop blood pressure (verify with the provider)      ii. HOLD medications that will be removed by dialysis (contact pharmacy with questions, verify with the provider)   d. Nursing Priorities      i. Monitor vital signs and EKG closely throughout (risk for hypotension or EKG changes)     ii. Monitor labs values closely    iii. Weigh the client before and after dialysis to estimate fluid loss (1 kg = 1L)     iv. Assess for bleeding from the site  e. Vascular Access      i. Types 1. Graft (artificial ‘vessel’ loop) 2. Fistula (allows higher velocity/volume in veins) 3. External Dialysis Catheter (usually temporary)      ii. Do NOT insert IVs or take NIBP on the extremity with active fistula or graft     iii. Assess pulses and capillary refill in the affected extremity     iv. Monitor fistulas and grafts closely for clots 1. Bruit: listen for a swooshing sound 2. Thrill: feel the vibrations 3. If bruit and thrill are absent notify the provider      v. Protect Vascular Access → their LIFELINE!

2. Peritoneal Dialysis    a. Peritoneum acts as a semipermeable membrane for dialysis         i. Contraindications are peritonitis and abdominal surgery        ii. Can be continuous (24/7) or intermittent and can be done at home    b. The client is at risk for peritonitis (infection of the peritoneum) which can be prevented with strict sterile technique and will show as a cloudy outflow

Nursing Case Study for Dialysis

Patient profile:.

• Fatigue and weakness 
• Fluid retention with swelling in the legs and ankles 
• Elevated blood pressure 
• Elevated serum creatinine and blood urea nitrogen (BUN) levels 
• Physical Examination: Mr. Anderson displayed pitting edema in the lower extremities and elevated blood pressure 
• Laboratory Tests: Elevated serum creatinine and BUN levels, indicating impaired kidney function 
• Renal Ultrasound: Confirmed end-stage renal disease with minimal kidney function 

Medical History: Mr. Anderson had a long-standing history of poorly controlled hypertension and diabetes, which led to end-stage renal disease 

Diagnosis:  Mr. Anderson was diagnosed with end-stage renal disease (ESRD) and required renal replacement therapy in the form of dialysis.  Treatment Plan: 

With diligent nursing care and regular dialysis sessions, Mr. Anderson’s symptoms improved significantly. His fluid retention decreased, and his blood pressure was stabilized. Regular dialysis sessions helped manage his renal function and maintained his overall well-being. 

Conclusion and Free Download

This dialysis review provides essential knowledge for approaching the NCLEX with confidence. Understanding its prevention, management, and interventions empowers nurses to provide adequate care and save lives.

Looking for more must-know NCLEX review topics? Download our free eBook, "NCLEX Flash Notes: 77 Must-Know Nursing Topics for the NCLEX," by simply providing your email address below. I'll send you a complimentary copy straight to your inbox!

You CAN Do This

Happy Nursing!

Chronic Kidney Disease (CKD) NCLEX Review for Nursing Students + Free Download

You'll need to know this about pelvic inflammatory disease (pid) for the nclex exam, similar blog posts.

What Every Nursing Student Needs to Know About Acute Kidney Injury (AKI)

Blood Transfusions NCLEX Review for Nursing Students + Free Download

• Subscribe to journal Subscribe
• Get new issue alerts Get alerts

Secondary Logo

Journal logo.

Colleague's E-mail is Invalid

Your message has been successfully sent to your colleague.

Save my selection

Improving Outcomes for Patients with Chronic Kidney Disease

Norton, Jenna M. MPH; Newman, Eileen P. MS, RD; Romancito, Gayle RN; Mahooty, Stephanie DNP, MSN; Kuracina, Theresa MS, RD, CDE, LN; Narva, Andrew S. MD, FACP, FASN

Jenna M. Norton is the program manager of the National Kidney and Urologic Science Translation Program at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health, Bethesda, MD. Andrew S. Narva is the director and Eileen P. Newman is the associate director of the National Kidney Disease Education Program in the Division of Kidney, Urologic, and Hematologic Diseases at the NIDDK. Gayle Romancito is a nurse at the Zuni Comprehensive Community Health Center, Indian Health Service, Zuni, NM. Stephanie Mahooty is an NP at Renal Medicine Associates and Desert Kidney Associates in Albuquerque, NM. Theresa Kuracina is a dietitian at the Albuquerque Indian Health Center, Indian Health Service, Albuquerque, NM. Authors Narva, Newman, and Norton are federal employees of the National Institutes of Health, and Romancito and Kuracina are federal employees of the Indian Health Service. Contact author: Andrew S. Narva, [email protected] . The authors and planners have disclosed no potential conflicts of interest, financial or otherwise.

Coping with chronic kidney disease (CKD) is challenging for many people, since symptoms often don't appear until the disease is advanced and the patient is close to requiring dialysis. This two-part article aims to provide nurses with the basic information necessary to assess and manage patients with CKD. Part 1, which appeared last month, offered an overview of the disease, described identification and etiology, and discussed ways to slow disease progression. Part 2 addresses disease complications and treatment for kidney failure.

The second installment of this two-part article on assessing and managing patients with chronic kidney disease addresses disease complications and treatment for kidney failure.

In Part 1 of this article, which appeared last month, we offered an overview of chronic kidney disease (CKD), described its identification and etiology, and discussed ways to slow disease progression. Here, in part 2, we address disease complications and treatment for kidney failure. As in part 1, the case study of Anna Lowry, a 49-year-old woman with CKD, will be used for illustration, offering nurses specific guidance in helping patients to better understand and manage their CKD. (This case is a composite based on the authors’ experience.)

COMPLICATIONS OF CKD

As kidney function declines, fewer functioning nephrons remain. The complications associated with CKD are complex, and may include anemia, hyperkalemia, hypoalbuminemia, metabolic acidosis, and abnormal mineral metabolism and bone disease. Laboratory work may show multiple metabolic abnormalities. Yet most people don't feel any different until their CKD is quite advanced. As noted in part 1, dietary choices can affect many of the metabolic abnormalities associated with CKD. Thus referral to a registered dietitian who is knowledgeable about CKD may help in managing complications.

There are many symptoms, signs, and laboratory values that must be tracked in patients with progressive CKD. The unique nature of the nurse–patient relationship may allow nurses to pick up on symptoms and signs that the primary care provider might have missed—particularly nonverbal behaviors and cues. It's essential for nurses to alert primary care providers to any subtle changes in a patient's condition, psychosocial issues, patient concerns, abnormal laboratory test results, or trends in laboratory values. (See Case Study: Metabolic Complications .)

Anemia. In the general population, a hemoglobin level of less than 13 g/dL in men and less than 12 g/dL in women indicates anemia. 1, 2 But the optimal target hemoglobin level for people with CKD is currently unknown.

Anemia may occur early in CKD and is generally due to inadequate synthesis of the hormone erythropoietin by the damaged kidneys. The prevalence of anemia increases as the glomerular filtration rate (GFR) declines, affecting nearly 50% of patients with an estimated GFR (eGFR) of less than 30 mL/min/1.73 m 2 . 3 Among patients with advanced CKD, there is evidence that the prevalence of anemia is higher in those with diabetes than in those without diabetes. 4

CKD-associated anemia is generally normochromic and normocytic. 5 That said, identifying and correcting other causes of anemia (such as iron deficiency) is necessary. 5 Assessing iron status in CKD requires a complete blood count and checking iron indices, including serum iron level and total iron-binding capacity (see Table 1 6-9 ). These two results are used to determine the transferrin saturation percentage, which reflects available iron. The serum ferritin level is used to assess stored iron. Optimal target levels of serum iron, total iron-binding capacity, and serum ferritin for people with CKD are unknown. Furthermore, they are affected by inflammation, 10 which is common in CKD, 11 making results more difficult to interpret. The absolute reticulocyte count may also be used to differentiate the cause of anemia or to monitor response to treatment. 8

Ruling out other causes of anemia, including vitamin-deficiency anemia, may also be important. Although megaloblastic anemia is not commonly seen with CKD, some people with diabetes who have taken metformin for years may be vitamin B 12 deficient. Metformin reportedly decreases absorption of this vitamin. 12 Both B 12 and folate levels may be lower than normal with metformin use. 13 Metformin is contraindicated in patients with an eGFR below 30 mL/min/1.73 m 2 . 14

Many other factors may contribute to inadequate iron stores in people with CKD. As their GFR declines, patients may lose interest in high-protein foods. Hepcidin, a hormone that plays a key role in controlling iron levels, regulating iron absorption from the gut, and mobilizing stored iron, accumulates in CKD, 15 and this may result in reduced serum iron levels. Inflammation may also play a significant role in reducing iron absorption. 5

Since iron deficiency is common in CKD, iron status and hemoglobin levels should be checked before the addition of any iron supplements to the regimen. 5 Supplemental iron is available in both oral and IV formulations. Absorption of oral iron supplements may be reduced by the intake of caffeinated beverages, supplemental calcium or calcium-containing antacids, and H 2 -receptor blockers or proton pump inhibitors. 16 Iron supplements may cause unwanted gastrointestinal effects such as heartburn or nausea. Beginning with half the recommended dosage and gradually increasing to the full dosage may help. 16 Patients may also have fewer adverse effects with a different preparation, or by taking iron with food, in divided doses, or along with stool softeners. 16 Injectable erythropoiesis-stimulating agents are used infrequently in treating CKD.

Hyperkalemia. Potassium excretion is regulated by the renin−angiotensin−aldosterone system (RAAS). Perturbations of this system may result in hyperkalemia. Potassium levels tend to increase as GFR declines. 17 Nearly half of patients with an eGFR less than 30 mL/min/1.73 m 2 have serum potassium levels of 4.5 mEq/L or greater. 3 RAAS antagonists may increase the risk of hyperkalemia. Potassium-sparing medications, dietary intake, and transcellular shifts may also affect serum potassium levels.

Several factors can cause potassium to shift between the intracellular and extracellular compartments. Insulin tends to move potassium into the cells; therefore, insulin deficiency can result in hyperkalemia. 18 Metabolic acidosis, characterized by an excess of hydrogen ions in the plasma, may drive potassium out of the cells, as hydrogen ions are buffered intracellularly. 18 As a result, treating both hyperglycemia and acidemia may lower serum potassium. 18 In some patients with CKD, treating acidosis may allow the continued use of RAAS antagonists. 19

Patients with hyperkalemia should be counseled to limit foods that are higher in dietary potassium and to read ingredient lists in order to avoid foods that contain potassium chloride. Beginning in July 2018, food manufacturers will be required to include potassium on the Nutrition Facts label. 20

Hypoalbuminemia occurs in CKD as a result of multiple factors. Both acute and chronic inflammation are associated with reduced albumin synthesis. 21 Loss of albumin in the urine in large quantities is associated with reduced serum albumin levels. Metabolic acidosis, 22 insulin resistance, 23 and a decrease in intake of high-protein foods 24 may also contribute to low serum albumin. One large study of patients on maintenance hemodialysis found that a serum albumin level of greater than 3.8 g/dL was associated with reduced mortality risk, with the lowest such risk seen at levels of 4.4 g/dL or greater. 25 Unfortunately, another study found that only 11% of new dialysis patients had serum albumin levels of 4 g/dL or greater. 26

Metabolic acidosis is usually defined as a serum bicarbonate level of less than 22 mEq/L. The prevalence of decreased serum bicarbonate increases as GFR declines. 27 Nearly a quarter of patients with an eGFR below 30 mL/min/1.73 m 2 have a serum bicarbonate level of 20.5 mEq/L or less. 3 Chronic metabolic acidosis is associated with accelerated muscle degradation, reduced albumin synthesis, exacerbation of metabolic bone disease, impaired glucose tolerance, increased inflammation, and accelerated CKD progression. 28 Animal protein is a source of acid load, while fresh fruits and vegetables are not. Serum bicarbonate levels may increase as dietary protein intake decreases. 29

Interventions to treat chronic metabolic acidosis include an adequate (but not excessive) intake of animal protein and a supplemental base, such as sodium bicarbonate. 28 It's important to note that one 650-mg tablet of sodium bicarbonate has 178 mg of sodium. Reemphasize dietary salt restriction when sodium bicarbonate is prescribed. Some patients may need an added diuretic to help remove the extra sodium. 28

Abnormal mineral metabolism and bone disease. Some CKD patients may have low levels of 25-hydroxyvitamin D, 30 which can trigger complications that affect bone strength and increase the risk of vascular calcification. 31, 32 Serum calcium levels also decrease as a result of low vitamin D levels. 33 Serum phosphorus levels may be within the normal range until CKD is advanced. 33

As eGFR declines, the prevalences of hypocalcemia and hyperphosphatemia increase. 3, 33 Over 19% of patients with an eGFR below 30 mL/min/1.73 m 2 have a serum calcium level of 8.9 mg/dL or less, and nearly 30% have a serum phosphorus level of 4.7 mg/dL or more. 3 The systemic disorders of mineral and bone metabolism associated with CKD are reflected in abnormalities in calcium, phosphorus, parathyroid hormone, and vitamin D metabolism. These derangements result in abnormalities in bone turnover, mineralization, volume, and linear growth or strength. 33 They may be associated with vascular or other soft tissue calcification. 34

Bone disease in people with CKD is complex, and interpreting laboratory test results is difficult. Although observational data support the correction of the metabolic abnormalities, there is limited high-quality evidence to support intervention. Phosphorus restriction may be implemented while trying to maintain adequate protein intake. 30 Phosphorus-binding medications are generally prescribed with meals in order to prevent phosphorus absorption. Low 25-hydroxyvitamin D levels may be treated with ergocalciferol or cholecalciferol, although further trials are needed to confirm the benefits. 31 Elevated parathyroid hormone levels may be managed with vitamin D and phosphorus restriction. 31 Most adults exceed the recommended dietary allowance of 700 mg/day for phosphorus. 35 According to 2011–2012 National Health and Nutrition Examination Survey (NHANES) data, the average phosphorus intake was 1,393 mg/day. 36

Depending on the food source, phosphorus absorption varies. Between 10% and 60% of phosphorus found naturally in protein-rich foods (such as meat, poultry, dairy, nuts, seeds, dried beans, and whole grains) is absorbed. 37 Between 80% and 100% of inorganic phosphorus, which is added to many packaged and processed foods, is absorbed. 37 For example, colas contain phosphoric acid. Sodium phosphates are often added to poultry and pork products to enhance flavor or preserve tenderness. Cereals fortified with calcium may contain calcium phosphate.

Patients should be counseled to check ingredient lists for words containing “phos”—such as phosphorus, sodium phosphate, or pyrophosphate—and to avoid foods that contain such ingredients. Because protein-rich foods tend to contain significant amounts of phosphorus, reducing consumption of such foods may also help in reducing phosphorus intake.

PREPARING FOR KIDNEY FAILURE

Coping with CKD and kidney failure is challenging for many people, since symptoms don't often appear until the disease is advanced and the patient is close to requiring dialysis. Many patients exert great effort in adhering to all treatment recommendations, yet still experience CKD progression. Furthermore, both the disease itself and treatment with dialysis are complicated matters. Patients may have difficulty understanding the implications of changes in their health status. It's not uncommon for patients to experience grief, fear, or depression.

Historically, the health care community has not done a good job in educating CKD patients. An analysis of 1994–1998 and 1999–2000 NHANES data showed that fewer than 20% of patients with both moderately decreased kidney function (an eGFR of 30 to 59 mL/min/1.73 m 2 ) and albuminuria (a urine albumin-to-creatinine ratio greater than 30 mg/g) had ever been told by a physician that they had “weak or failing kidneys.” 38 Such delayed awareness leaves many patients with little time to prepare for kidney failure, leaving them limited options when they face decisions about treatment. As one reflection of inadequate preparation, consider that in 2013 more than 80% of people started hemodialysis with a temporary vascular access (catheter). 39

Many nurses aren't comfortable discussing CKD or dialysis with patients, 40, 41 and may defer such discussions to the nephrologist. This is a missed opportunity, because it's both appropriate and helpful for nurses to initiate these conversations. A new provider may not know the patient well, whereas the nurse in the diabetes or hypertension clinic who has been involved in managing the patient's conditions will have established a trust that can make education more effective. Nurses can help patients to better understand CKD and begin accepting and coping with changes in their health status. (See Case Study: Preparing for Kidney Failure .)

TREATMENT CHOICES FOR KIDNEY FAILURE

There are four options for treating kidney failure. Three involve kidney replacement therapy, including kidney transplantation, peritoneal dialysis, or hemodialysis (either in a dialysis center or at home). The fourth option involves supportive care without transplantation or dialysis.

Transplantation. In general, a kidney transplant is associated with the best quality of life and survival (see Figure 1 42 ). To receive a kidney transplant, a patient must be healthy enough to endure a surgery that can last several hours; have access to a donated kidney, either through a living donor or by being on the waiting list for a deceased donor kidney; and be willing to take antirejection medications daily and to have routine follow-up appointments for the rest of her or his life. Although antirejection medications suppress the immune system, organ rejection remains a possibility. With a functioning transplant, dialysis is not needed, and a near-normal diet can be followed.

Kidney transplantation is a treatment, not a cure. The transplanted kidney will likely work very well for a time—according to recent data trends analyses, 92% of deceased donor and 97% of living donor kidneys continue to work at one year following transplantation, and 47% of deceased donor and 62% of living donor kidneys are still working 10 years later 39 —but eventually it is likely to fail. The outcome improves if the donor and the recipient are ABO blood-type compatible and a match for human leukocyte antigens. Pretransplantation evaluation can take several months and typically includes a comprehensive assessment to check for the presence of any conditions that might place the patient or the transplanted kidney at risk (such as severe coronary artery disease or cancer). Eligibility criteria vary from facility to facility, with some more willing to include patients with a higher body mass index.

Peritoneal dialysis may be a choice for a patient who has no contraindicating abdominal pathology (such as extensive abdominal surgery), wants to do in-home treatment, is willing to perform the treatment daily, and has room to store the necessary supplies. Patients using peritoneal dialysis usually don't require vascular access, but do require minor surgery for abdominal catheter placement.

In peritoneal dialysis, the peritoneal membrane is used as a semipermeable filter, replacing the kidneys. In a peritoneal dialysis exchange, a dialysis solution (the dialysate) flows through the catheter into the abdominal cavity, where it remains for a prescribed period of time known as the dwell time. Through the process of diffusion, waste products move down the concentration gradient from the blood in the peritoneal capillaries into the dialysate. The efficiency of this clearance is determined by the concentration gradient; the size of the solute; and the permeability of the peritoneal membrane, which can vary over time. The dialysate includes an osmotic agent that draws fluid into the peritoneal cavity, removing water and producing some additional clearance by bulk flow. At the end of the dwell time, the solution is drained out through the catheter. The continuous nature of peritoneal dialysis allows the patient to reach equilibrium, avoiding the up-and-down cycles of hemodialysis.

The dialysis prescription must be individualized for each patient. Generally, dextrose is used as the osmotic agent, with the concentration varying based on how much fluid must be removed. The higher the dextrose concentration, the more fluid will be removed—but more dextrose will also be absorbed, elevating blood sugar. Each dialysis exchange is generally two to three liters in volume. The dwell times and the number of exchanges per day vary depending on the patient and the characteristics of the peritoneal membrane.

There are several options for peritoneal dialysis. Continuous ambulatory peritoneal dialysis is performed manually four to five times during the day. Continuous cycling peritoneal dialysis involves the use of a cycler, a small appliance that performs the exchanges automatically. With the cycler, many patients can perform enough exchanges while asleep at night, such that they don't need additional exchanges during the day. Some patients need one or two additional manual exchanges during the day for adequate clearance. Most patients on peritoneal dialysis now use the cycler.

It's important for patients on peritoneal dialysis to restrict their potassium intake. (Such restriction may be greater for patients on hemodialysis.) Amino acids that are lost during the exchanges must be replaced, and the patient's dietary protein needs will be higher. Absorbed dextrose may cause the patient to gain weight. Because peritoneal dialysis is continuous, patients are never in a fasting state, and this has particular implications for those who have diabetes. Glucose levels may be harder to control, but insulin can be added to the dialysis solution. Some patients experience body-image concerns associated with the catheter, and may need psychological and emotional support.

Hemodialysis. In hemodialysis, patients are treated with a hemodialysis machine three or more times a week. A dialyzer serves as the filter, replacing the kidneys. The patient's blood is pumped from the body through tubing, passes through the dialyzer, and is returned to the body. Along the way, blood pressure monitors and airflow detectors ensure the patient's safety. (See Figure 2 .)

The blood enters at the top of the dialyzer and is forced through multiple hollow filaments, each about the size of a human hair. Each filament acts as a semipermeable membrane. As blood passes through the filaments, the dialysis solution flows around the outside of the filaments. It takes less than one second for blood to pass from the top of the dialyzer to the bottom; as it does, waste products diffuse into the dialysate and are carried off, and the blood returns to the body. Diffusion efficiency depends on the size of the solute. Protein-bound substances usually aren't removed; some amino acids, glucose, and water-soluble vitamins are removed. (See Figure 3 .)

In-center hemodialysis may be a choice for a patient who can travel to a dialysis center three times a week for scheduled treatments, prefers that trained staff handle the treatments, doesn't mind venipuncture, and is willing to follow a diet that includes numerous restrictions. Advantages of in-center hemodialysis include the availability of facilities nationwide and the presence of trained staff to do the work. If they so choose, patients can be relatively passive. The staff places the needles, monitors treatment, and maintains the equipment. As with many people with chronic illnesses, people with end-stage kidney disease may become socially isolated, and may enjoy the social setting of the dialysis center. Patients typically spend three to four hours three times a week with the same relatively small group of other patients and providers. Disadvantages include more stringent dietary restrictions, the loss of nutrients during hemodialysis, limited control over the procedure, and the burden of travel to and from the center. Furthermore, hemodialysis patients never reach equilibrium, experiencing instead either a gradual increase in waste products and fluids between treatments or a rapid decrease of these during treatment. These up-and-down cycles may fatigue patients.

Home hemodialysis may be a choice for a patient who wants to perform in-home treatments, has someone to help in doing so, can perform treatments three or more times per week, has room for the machine and supplies, and doesn't mind needlesticks and self-cannulation.

Home hemodialysis is becoming more popular. 39 It requires training and support. As with in-center hemodialysis, home hemodialysis can be done three times per week. But it also permits other options, including daily dialysis for two to three hours, five to six times per week, and nocturnal dialysis for six to eight hours, three or more nights per week. More frequent home dialysis appears to be associated with significant benefits to the patient. 43

Home hemodialysis has a different set of advantages and disadvantages. On the one hand, patients have more control over their schedules, travel isn't required, and the newer machines are smaller and easier to use than the older models were. The diet may be less restrictive, and phosphate binders may be less necessary or not needed. And if treatments are done more frequently, the ups and downs are less severe. On the other hand, home hemodialysis requires that a second person (often a partner or other family member) be present to assist, which may cause stress to the patient, the other person, or both. Either the patient or the person assisting has to insert the needles; and the machine and supplies require space. The patient might have to take time off from work in order to get the initial training, which may not be offered locally. Protein requirements are higher because of protein losses during treatment.

Vascular access . To perform hemodialysis, vascular access must be created. In dialysis, blood usually flows at a rate of about 400 mL/min. Withdrawing blood at that rapid rate from any native peripheral vein would collapse that vein. A blood vessel that can withstand that withdrawal rate without collapse is required.

With permanent vascular access, an artificial connection between an artery and a vein is created, such that some blood is diverted to the vein. This connection may be direct or indirect. An arteriovenous fistula establishes a direct connection, and is the preferred access method, as it's less likely to become infected or to clot (see Figure 4A ). Fistula maturation takes several weeks and involves dilation and thickening of the vein, which occurs as a result of increased blood flow. Once the fistula is mature, access to blood flow for dialysis occurs through a percutaneous needlestick. If a direct connection cannot be created because of small vessel size or another mechanical problem, then an arteriovenous graft is the second option. This connection is made indirectly, using a synthetic tube (see Figure 4B ).

Permanent vascular access is usually established in the nondominant arm. A large IV line (such as a peripherally inserted central catheter) placed in a peripheral vein can destroy that vein for future dialysis use. Patients with CKD should be counseled to protect the blood vessels in both arms by avoiding venipuncture or IV catheter placement above the wrist, if possible. When emergent dialysis must be performed, temporary vascular access may be established using a central vein, usually by placing a catheter in the internal jugular vein in the neck. However, this is only a temporary solution. Catheters are associated with inadequate dialysis, increased infection rates, increased clotting, and inflammation. 44

Supportive treatment without transplantation or dialysis. Opting for neither transplantation nor dialysis may be right for patients who feel that such treatments won't improve their health; feel they've done what they wanted to do in life; and, ideally, have family and friends who support their decision. Supportive treatment involves active medical management in which many complications can be treated. Medications for CKD are usually continued and can be adjusted. However, with supportive treatment there is no medical intervention aimed at replacing lost kidney function. Without clearance of uremic toxins, the patient will eventually become uremic.

It's essential to provide comfort and palliative care to these patients. Patients who choose supportive therapy need to understand that without kidney replacement therapy, they will eventually die from uremia; it's important that their family members understand this also. These facts must be presented in a manner that doesn't question the patient's decision, yet ensures that the decision is an informed one.

For additional information on caring for patients with CKD, visit the Web site of the National Kidney Disease Education Program ( http://bit.ly/2gaGy4w ).

For eight additional continuing nursing education activities on topics related to kidney disease, go to www.nursingcenter.com/ce .

chronic kidney disease; collaborative care; end-stage kidney failure; end-stage renal failure; interdisciplinary care; kidney disease

• + Favorites
• View in Gallery

Readers Of this Article Also Read

Ce: improving outcomes for patients with chronic kidney disease: part 1, nursing in pneumonia, stage 4 chronic kidney disease: preserving kidney function and preparing..., chronic kidney disease, urinary retention: management in the acute care setting part 2.

Want to create or adapt books like this? Learn more about how Pressbooks supports open publishing practices.

Day 1:  A 62-year old, recently widowed male Hispanic patient, named Mr. Kevin Ulyses Blanco (K. U. B.) was brought in to the emergency department (ED) by his daughter for progressively worsening shortness of breath, fatigue, a lingering non-productive cough, and generalized edema. One month prior, he noticed dyspnea upon exertion, loss of appetite, nausea, vomiting and malaise, which he attributed to the flu. In the emergency department, he appeared anxious and pale, and had a dry yellow tint to the skin. He denied any chest pain, and he could not recall the last time he urinated. He has history of benign prostatic hyperplasia, diabetes mellitus type 2, hypertension, dyslipidemia, and renal insufficiency for the past two years. His ED assessment findings included: 1+ pedal edema, basilar crackles in the lungs bilaterally, and a scant amount of urine according to a bladder scan. His lab results indicated a glomerular filtration rate (GFR) of 12. Based on his subjective and objective symptoms, he was admitted with a diagnosis of progression of chronic kidney disease (CKD) to end-stage renal disease (ESRD). The plan of care was focused on managing his symptoms and consulting with his nephrologist regarding need for hemodialysis.

Day 3:  Mr. K.U.B had an AV graft placed in his forearm to receive dialysis and a dual-lumen hemodialysis catheter for temporary use. His symptoms were worsening despite medical interventions and hemodialysis was needed urgently. The plan was to continue his medications to manage anemia, HTN, diabetes, and renal disease. The nurse identified psychosocial stressors of financial concern and having to live alone with his worsening health condition. With his daughter living far away, he was worried he wouldn’t have support. He stated that he was worried about the financial burden of hemodialysis and struggled with facing the reality of his diagnosis and what his quality of life would be like in the next few years of his life. A recommendation was made for a social worker and psychiatric consult.

Day 8:  By the end of day 8, most of his acute symptoms had been relieved and he was stable enough to be discharged. He had been in contact with case management for his follow up appointment had been made with his primary physician and discharge teaching was given.

• What modifiable factors could Mr. K.U.B. have addressed to slow the progression of his renal disease?
• What collaborative interventions could be used to enhance his care and ensure continuity of care after discharge?
• What affect did uncontrolled hypertension and poor medication compliance have on his disease process?

Nursing Case Studies by and for Student Nurses Copyright © by jaimehannans is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License , except where otherwise noted.

Share This Book

Acidosis: Metabolic acidosis is a big problem in patients with renal failure because the kidneys have lost their ability to manufacture bicarbonate which is a main buffer in the body. If your kidney failure patient becomes altered or has decreased LOC, you would be wise to get an ABG and check their pH.

Electrolytes: Dangerously high potassium levels are the typical cause for emergent dialysis. Get your patient on the monitor and keep an eye out for ectopy, dysrhythmias, bradycardia and tall T-waves.

Intoxicants: If your patient has overdosed on something and you need to get it out NOW, then dialysis could be the way to go. Some blood thinners, for instance, have no antidote…you can either wait it out and replenish blood as you go, or dialyze it out.

Overload: Fluid overload that is compromise cardiac and respiratory status needs to be dealt with ASAP! Dialysis to the rescue!

Uremia: A toxic buildup of uremia (waste products) in the blood causes a whole host of problems. Signs include hypertension, fatigue, confusion and nausea.

____________________________________________________________

The information, including but not limited to, audio, video, text, and graphics contained on this website are for educational purposes only. No content on this website is intended to guide nursing practice and does not supersede any individual healthcare provider’s scope of practice or any nursing school curriculum. Additionally, no content on this website is intended to be a substitute for professional medical advice, diagnosis or treatment.

For even more information about taking care of patients in renal failure, check out our premium study guide! It’s almost as amazing as you are 🙂

Last Updated on December 9, 2022 by SupportVA

20 Secrets of Successful Nursing Students

Being a successful nursing student is more than just study tips and test strategies. It’s a way of life.

you may also like...

Dialysis Disequilibrium Syndrome Demystified: Episode 247

Your Guide to DDS

The Low-Down on Dialysis: Episode 95

Let’s Talk About Acid-Base Balance: Episode 65

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

• View all journals
• Explore content
• About the journal
• Publish with us
• Sign up for alerts
• Review Article
• Published: 30 July 2020

The current and future landscape of dialysis

• Jonathan Himmelfarb   ORCID: orcid.org/0000-0002-3319-1224 1 , 2 ,
• Raymond Vanholder   ORCID: orcid.org/0000-0003-2633-1636 3 ,
• Rajnish Mehrotra   ORCID: orcid.org/0000-0003-2833-067X 1 , 2 &
• Marcello Tonelli   ORCID: orcid.org/0000-0002-0846-3187 4  

Nature Reviews Nephrology volume  16 ,  pages 573–585 ( 2020 ) Cite this article

90k Accesses

293 Citations

130 Altmetric

Metrics details

• Haemodialysis
• Health care economics
• Health services
• Medical ethics

The development of dialysis by early pioneers such as Willem Kolff and Belding Scribner set in motion several dramatic changes in the epidemiology, economics and ethical frameworks for the treatment of kidney failure. However, despite a rapid expansion in the provision of dialysis — particularly haemodialysis and most notably in high-income countries (HICs) — the rate of true patient-centred innovation has slowed. Current trends are particularly concerning from a global perspective: current costs are not sustainable, even for HICs, and globally, most people who develop kidney failure forego treatment, resulting in millions of deaths every year. Thus, there is an urgent need to develop new approaches and dialysis modalities that are cost-effective, accessible and offer improved patient outcomes. Nephrology researchers are increasingly engaging with patients to determine their priorities for meaningful outcomes that should be used to measure progress. The overarching message from this engagement is that while patients value longevity, reducing symptom burden and achieving maximal functional and social rehabilitation are prioritized more highly. In response, patients, payors, regulators and health-care systems are increasingly demanding improved value, which can only come about through true patient-centred innovation that supports high-quality, high-value care. Substantial efforts are now underway to support requisite transformative changes. These efforts need to be catalysed, promoted and fostered through international collaboration and harmonization.

The global dialysis population is growing rapidly, especially in low-income and middle-income countries; however, worldwide, a substantial number of people lack access to kidney replacement therapy, and millions of people die of kidney failure each year, often without supportive care.

The costs of dialysis care are high and will likely continue to rise as a result of increased life expectancy and improved therapies for causes of kidney failure such as diabetes mellitus and cardiovascular disease.

Patients on dialysis continue to bear a high burden of disease, shortened life expectancy and report a high symptom burden and a low health-related quality of life.

Patient-focused research has identified fatigue, insomnia, cramps, depression, anxiety and frustration as key symptoms contributing to unsatisfactory outcomes for patients on dialysis.

Initiatives to transform dialysis outcomes for patients require both top-down efforts (that is, efforts that promote incentives based on systems level policy, regulations, macroeconomic and organizational changes) and bottom-up efforts (that is, patient-led and patient-centred advocacy efforts as well as efforts led by individual teams of innovators).

Patients, payors, regulators and health-care systems increasingly demand improved value in dialysis care, which can only come about through true patient-centred innovation that supports high-quality, high-value care.

Similar content being viewed by others

Epidemiology of haemodialysis outcomes

Epidemiology of peritoneal dialysis outcomes

Kidney disease trials for the 21st century: innovations in design and conduct

Introduction.

Haemodialysis as a treatment for irreversible kidney failure arose from the pioneering efforts of Willem Kolff and Belding Scribner, who together received the 2002 Albert Lasker Clinical Medical Research Award for this accomplishment. Kolff treated his first patient with an artificial kidney in 1943 — a young woman who was dialysed 12 times successfully but ultimately died because of vascular access failure. By 1945, Kolff had dialysed 15 more patients who did not survive, when Sofia Schafstadt — a 67-year-old woman who had developed acute kidney injury — recovered, becoming the first long-term survivor after receipt of dialysis. In 1960, Belding Scribner, Wayne Quinton and colleagues at the University of Washington, WA, USA, designed shunted cannulas, which prevented the destruction of blood vessels and enabled repeated haemodialysis sessions. The first patient who received long-term treatment (named Clyde Shields) lived a further 11 years on haemodialysis. In their writings, both Kolff and Scribner eloquently described being motivated by their perception of helplessness as physicians who had little to offer for the care of young patients who were dying of uraemia and stated that the goal of dialysis was to achieve full rehabilitation to an enjoyable life 1 .

The potential to scale the use of dialysis to treat large numbers of patients with kidney failure created great excitement. At the 1960 meeting of the American Society for Artificial Internal Organs (ASAIO), Scribner introduced Clyde Shields to physicians interested in dialysis, and Quinton demonstrated fabrication of the shunt. The following decade saw rapid gains in our understanding of kidney failure, including the discovery of uraemia-associated atherogenesis and metabolic bone disease, and in virtually every aspect of haemodialysis, including improvements in dialyser technology, dialysate composition, materials for haemocompatibility and water purification systems. The Scribner–Quinton shunt rapidly became an historical artefact once Brescia and colleagues developed the endogenous arteriovenous fistula in 1966 (ref. 2 ), and prosthetic subcutaneous interpositional ‘bridge’ grafts were developed shortly thereafter. Concomitant with these pioneering efforts, in 1959, peritoneal dialysis (PD) was first used successfully to sustain life for 6 months. Within 2 years a long-term PD programme was established in Seattle, WA, USA, and within 3 years the first automated PD cycler was developed 3 .

In 1964, Scribner’s presidential address to the ASAIO described emerging ethical issues related to dialysis, including considerations for patient selection, patient self-termination of treatment as a form of suicide, approaches to ensure death with dignity and selection criteria for transplantation 4 . Indeed, the process of selecting who would receive dialysis contributed to the emergence of the field of bioethics. The early success of dialysis paradoxically created social tensions, as access to this life-sustaining therapy was rationed by its availability and the ‘suitability’ of patients. In the early 1970s, haemodialysis remained a highly specialized therapy, available to ~10,000 individuals, almost exclusively in North America and Europe, with a high frequency of patients on home haemodialysis. In a portentous moment, Shep Glazer, an unemployed salesman, was dialysed in a live demonstration in front of the US Congress House Ways and Means Committee. Soon thereafter, in October 1972, an amendment to the Social Security Act creating Medicare entitlement for end-stage renal disease (now known as kidney failure), for both dialysis and kidney transplantation, was passed by Congress and signed into law by President Nixon.

The resulting expansion of dialysis, previously described as “from miracle to mainstream” 5 , set in motion dramatic changes 6 , including the development of a for-profit outpatient dialysis provider industry; relaxation of stringent patient selection for dialysis eligibility in most HICs; a move away from home towards in-centre dialysis; efforts on the part of single payors such as Medicare in the USA to restrain per-patient costs through the introduction of bundled payments and the setting of composite rates; the development of quality indicators — such as adequate urea clearance per treatment — that were readily achievable but are primarily process rather than outcome measures; consolidation of the dialysis industry, particularly in the USA owing to economies of scale, eventually resulting in a duopoly of dialysis providers; the development of joint ventures and other forms of partnerships between dialysis providers and nephrologists; the globalization of dialysis, which is now available, albeit not necessarily accessible or affordable in many low-income and middle-income countries (LMICs); and finally, a dramatic slowing in the rate of true patient-centred innovation, with incremental gains in dialysis safety and efficiency replacing the pioneering spirit of the early innovators.

The population of patients receiving dialysis continues to grow rapidly, especially in LMICs, as a result of an increase in the availability of dialysis, population ageing, increased prevalence of hypertension and diabetes mellitus, and toxic environmental exposures. However, despite the global expansion of dialysis, notable regional differences exist in the prevalence of different dialysis modalities and in its accessibility. Worldwide, a substantial number of people do not have access to kidney replacement therapy (KRT), resulting in millions of deaths from kidney failure each year. Among populations with access to dialysis, mortality remains high and outcomes suboptimal, with high rates of comorbidities and poor health-related quality of life. These shortcomings highlight the urgent need for innovations in the dialysis space to increase accessibility and improve outcomes, with a focus on those that are a priority to patients. This Review describes the current landscape of dialysis therapy from an epidemiological, economic, ethical and patient-centred framework, and provides examples of initiatives that are aimed at stimulating innovations in dialysis and transform the field to one that supports high-quality, high-value care.

Epidemiology of dialysis

Kidney failure is defined by a glomerular filtration rate <15 ml/min/1.73 m 2 (ref. 7 ) and may be treated using KRT (which refers to either dialysis or transplantation) or with supportive care 8 . The global prevalence of kidney failure is uncertain, but was estimated to be 0.07%, or approximately 5.3 million people in 2017 (ref. 9 ), with other estimates ranging as high as 9.7 million. Worldwide, millions of people die of kidney failure each year owing to a lack of access to KRT 10 , often without supportive care. Haemodialysis is costly, and current recommendations therefore suggest that haemodialysis should be the lowest priority for LMICs seeking to establish kidney care programmes. Rather, these programmes should prioritize other approaches, including treatments to prevent or delay kidney failure, conservative care, living donor kidney transplantation and PD 11 . Nonetheless, haemodialysis is the most commonly offered form of KRT in LMICs, as well as in high-income countries (HICs) 12 , and continued increases in the uptake of haemodialysis are expected worldwide in the coming decades. Here, we review the basic epidemiology of kidney failure treated with long-term dialysis and discuss some of the key epidemiological challenges of the future (Fig.  1a ).

Growth is continuously outpacing the capacity of kidney replacement therapy (KRT), defined as maintenance dialysis or kidney transplant, especially in low-income and middle-income countries. a | Global prevalence of chronic dialysis. b | Estimated worldwide need and projected capacity for KRT by 2030. pmp, per million population. Adapted with permission from the ISN Global Kidney Health Atlas 2019.

Prevalence of dialysis use

Prevalence of haemodialysis.

Worldwide, approximately 89% of patients on dialysis receive haemodialysis; the majority (>90%) of patients on haemodialysis live in HICs or the so-called upper middle-income countries such as Brazil and South Africa 12 , 13 . The apparent prevalence of long-term dialysis varies widely by region but correlates strongly with national income 14 . This variation in prevalence in part reflects true differences in dialysis use 12 , 15 but also reflects the fact that wealthier countries are more likely than lower income countries to have comprehensive dialysis registries. Of note, the prevalence of haemodialysis is increasing more rapidly in Latin America (at a rate of ~4% per year) than in Europe or the USA (both ~2% per year), although considerable variation between territories exists in all three of these regions, which again correlates primarily (but not exclusively) with wealth 16 , 17 . The prevalence of haemodialysis varies widely across South Asia, with relatively high prevalence (and rapid growth) in India and lower prevalence in Afghanistan and Bangladesh 18 . Limited data are available on the prevalence of dialysis therapies in sub-Saharan Africa 19 . A 2017 report suggests that haemodialysis services were available in at least 34 African countries as of 2017, although haemodialysis was not affordable or accessible to the large majority of resident candidates 13 .

Prevalence of peritoneal dialysis

Worldwide, PD is less widely available than haemodialysis. In a 2017 survey of 125 countries, PD was reportedly available in 75% of countries whereas haemodialysis was available in 96% 20 . In 2018, an estimated 11% of patients receiving long-term dialysis worldwide were treated with PD; a little over half of these patients were living in China, Mexico, the USA and Thailand 21 .

Large variation exists between territories in the relative use of PD for treating kidney failure; in Hong Kong for example, >80% of patients on dialysis receive PD, whereas in Japan this proportion is <5% 22 . This variation is, in part, determined by governmental policies and the density of haemodialysis facilities 23 . In some countries such as the USA, rates of PD utilization also vary by ethnicity with African Americans and Hispanics being much less likely than white Americans to receive PD 24 . Disparate secular trends in PD use are also evident, with rapid growth in the use of PD in some regions such as the USA, China and Thailand and declining or unchanging levels of PD use in other regions, for example, within Western Europe 22 . As for haemodialysis, access to PD is poor in many LMICs for a variety of reasons, as comprehensively discussed elsewhere 25 .

Incidence of dialysis use

Following a rapid increase in dialysis use over a period of approximately two decades, the incidence of dialysis initiation in most HICs reached a peak in the early 2000s and has remained stable or slightly decreased since then 22 , 26 , 27 . Extrapolation of prevalence data from LMICs suggests that the incidence of dialysis initiation seems to be steadily increasing in LMICs 10 , 28 , 29 , 30 , with further increases expected over the coming decades. However, incidence data in LMICs are less robust than prevalence data, although neither reflect the true demand for KRT given the lack of reporting.

Of note, the incidence of dialysis initiation in HICs is consistently 1.2-fold to 1.4-fold higher for men than for women, despite an apparently higher risk of chronic kidney disease (CKD) in women 31 . Whether this finding reflects physician or health system bias, different preferences with regard to KRT, disparities in the competing risk of death, variation in rates of kidney function loss in women versus men, or other reasons is unknown and requires further study. Few data describe the incidence of haemodialysis by sex in LMICs.

Dialysis outcomes

Mortality is very high among patients on dialysis, especially in the first 3 months following initiation of haemodialysis treatment. Approximately one-quarter of patients on haemodialysis die within a year of initiating therapy in HICs, and this proportion is even higher in LMICs 32 , 33 , 34 . Over the past two decades, reductions in the relative and absolute risk of mortality have seemingly been achieved for patients on haemodialysis. Data suggest that relative gains in survival may be greater for younger than for older individuals; however, absolute gains seem to be similar across age groups 35 . Although controversial, improvements in mortality risk seem to have been more rapid among patients on dialysis than for the general population 36 , suggesting that better care of patients receiving dialysis treatments rather than overall health gains might be at least partially responsible for these secular trends. The factors responsible for these apparent trends have not been confirmed, but could include better management of comorbidities, improvements in the prevention or treatment of dialysis-related complications such as infection, and/or better care prior to the initiation of dialysis (which may translate into better health following dialysis initiation). Historically, although short-term mortality was lower for patients treated with PD than for those treated with haemodialysis, the long-term mortality risk was higher with PD 37 , 38 . In the past two decades, the reduction in mortality risk has been greater for patients treated with PD than with haemodialysis, such that in most regions the long-term survival of patients treated with PD and haemodialysis are now similar 39 , 40 , 41 .

Despite these improvements, mortality remains unacceptably high among patients on dialysis and is driven by cardiovascular events and infection. For example, a 2019 study showed that cardiovascular mortality among young adults aged 22–29 years with incident kidney failure was 143–500-fold higher than that of otherwise comparable individuals without kidney failure, owing to a very high burden of cardiovascular risk factors 42 . The risk of infection is also markedly greater among patients on dialysis than in the general population, in part driven by access-related infections in patients on haemodialysis with central venous catheters and peritonitis-related infections in patients on PD 43 , 44 , 45 , 46 , 47 . Hence, strategies to reduce the risk of infection associated with dialysis access should continue to be a high clinical priority.

The risk of mortality among patients on dialysis seems to be influenced by race. In the USA, adjusted mortality is lower for African American patients than for white patients on dialysis, although there is a significant interaction with age such that this observation held only among older adults, and the converse is actually true among younger African American patients aged 18 to 30 years 48 . A similar survival advantage is observed among Black patients compared with white patients or patients of Asian heritage on haemodialysis in the Netherlands 49 . In Canada, dialysis patients of indigenous descent have higher adjusted mortality, and patients of South Asian or East Asian ethnicity have lower adjusted mortality than that of white patients. In addition, between-region comparisons indicate that mortality among incident dialysis patients is substantially lower for Japan than for other HICs. Whether this difference is due to ethnic origin, differences in health system practices, a combination of these factors or other, unrelated factors is unknown 30 . No consistent evidence exists to suggest that mortality among incident adult dialysis patients varies significantly by sex 50 , 51 , 52 .

Other outcomes

Hospitalization, inability to work and loss of independent living are all markedly more common among patients on dialysis than in the general population 53 , 54 , 55 . In contrast to the modest secular improvements in mortality achieved for patients on dialysis, health-related quality of life has remained unchanged for the past two decades and is substantially lower than that of the general population, due in part to high symptom burden 56 , 57 , 58 , 59 . Depression is also frequent among patients on dialysis 60 , and factors such as high pill burden 61 , the need to travel to dialysis sessions and pain associated with vascular access puncture all affect quality of life 62 .

Future epidemiological challenges

The changing epidemiology of kidney failure is likely to present several challenges for the optimal management of these patients. For example, the ageing global population together with continuing increases in the prevalence of key risk factors for the development of kidney disease, such as diabetes mellitus and hypertension, mean that the incidence, prevalence and costs of kidney failure will continue to rise for the foreseeable future. This increased demand for KRT will undoubtedly lead to an increase in the uptake of haemodialysis, which will pose substantial economic challenges for health systems worldwide. Moreover, as growth in demand seems to be outpacing increases in KRT capacity, the number of deaths as a result of kidney failure is expected to rise dramatically (Fig.  1b ).

The same risk factors that drive the development of kidney disease will also increase the prevalence of multimorbidities within the dialysis population. These comorbidities will in turn require effective management in addition to the management of kidney failure per se 63 and will require technical innovations of dialysis procedures, as well as better evidence to guide the management of comorbidities in the dialysis population.

Finally, the particularly rapid increases in the incidence and prevalence of kidney failure among populations in LMICs will place considerable strain on the health systems of these countries. The associated increases in mortality resulting from a lack of access to KRT will create difficult choices for decision makers. Although LMIC should prioritize forms of KRT other than haemodialysis, some haemodialysis capacity will be required 11 , for example, to manage patients with hypercatabolic acute kidney injury or refractory PD-associated peritonitis, which, once available, will inevitably increase the use of this modality.

Health economy-related considerations

The cost of dialysis (especially in-centre or in-hospital dialysis) is high 64 , and the cost per quality-adjusted life-year associated with haemodialysis treatment is often considered to be the threshold value that differentiates whether a particular medical intervention is cost-effective or not 65 . Total dialysis costs across the population will probably continue to rise, owing to increases in life expectancy of the general population and the availability of improved therapeutics for causes of kidney failure such as diabetes mellitus, which have increased the lifespan of these patients and probably will also increase their lifespan on dialysis. KRT absorbs up to 5–7% of total health-care budgets, despite the fact that kidney failure affects only 0.1–0.2% of the general population in most regions 66 . Although societal costs for out-of-centre dialysis (for example, home or self-care haemodialysis, or PD) are in general lower than that of in-centre haemodialysis in many HICs, these options are often underutilized 67 , adding to the rising costs of dialysis.

Reimbursement for haemodialysis correlates with the economic strength of each region 68 , but in part also reflects willingness to pay . In most regions, the correlation curve for PD or reimbursement with respect to gross domestic product projects below that of in-centre haemodialysis, which in part reflects the lower labour costs associated with PD 68 . Unfortunately, little clarity exists with regard to the aggregated cost of single items that are required to produce dialysis equipment for both PD and haemodialysis and the labour costs involved in delivering haemodialysis 69 , which makes it difficult for governments to reimburse the real costs of haemodialysis.

Although increasing reimbursement of home dialysis strategies would seem to be an appropriate strategy to stimulate uptake of these modalities, evidence from regions that offer high reimbursement rates for PD suggests that the success of this strategy is variable 23 , 68 . However, financial incentives may work. In the USA, reimbursement for in-centre and home dialysis (PD or home haemodialysis) has for a long time been identical. The introduction of the expanded prospective payment system in 2011 further enhanced the financial incentives for PD for dialysis providers, which led to a doubling in both the absolute number of patients and the proportion of patients with kidney failure treated with PD 70 , 71 , 72 , 73 .

Although in countries with a low gross domestic product, dialysis consumes less in absolute amounts, it absorbs a higher fraction of the global health budget 68 , likely at the expense of other, potentially more cost-effective interventions, such as prevention or transplantation. Although society carries most of the costs associated with KRT in most HICs, some costs such as co-payment for drugs or consultations are borne by the individual, and these often increase as CKD progresses. In other regions, costs are covered largely or entirely by the patient’s family, leading to premature death when resources are exhausted 74 . In addition, costs are not limited to KRT but also include the costs of medication, hospitalizations and interventions linked to kidney disease or its complications (that is, indirect costs), as well as non-health-care-related costs such as those linked to transportation or loss of productivity.

Dialysis also has an intrinsic economic impact. Patients on dialysis are often unemployed. In the USA, >75% of patients are unemployed at the start of dialysis, compared with <20% in the general population 53 . Unemployment affects purchasing power but also lifestyle, self-image and mental health. Moreover, loss of productivity owing to unemployment and/or the premature death of workers with kidney failure also has economic consequences for society 75 . Therefore, continued efforts to prevent kidney failure and develop KRT strategies that are less time consuming for the patient and allow more flexibility should be an urgent priority. Concomitantly, employers must also provide the resources needed to support employees with kidney failure.

Hence, a pressing need exists to rethink the current economic model of dialysis and the policies that direct the choice of different treatment options. The cost of dialysis (especially that of in-centre haemodialysis) is considerable and will continue to rise as the dialysis population increases. Maintaining the status quo will prevent timely access to optimal treatment for many patients, especially for those living in extreme poverty and with a low level of education and for patients living in LMICs.

Ethical aspects

A 2020 review by a panel of nephrologists and ethicists appointed by three large nephrology societies outlined the main ethical concerns associated with kidney care 76 . With regard to management of kidney failure (Box  1 ), equitable access to appropriate treatment is probably the most important ethical issue and is relevant not only in the context of haemodialysis but also for the other modalities of kidney care (including transplantation, PD and comprehensive conservative care) 76 . Of note, conservative care is not equivalent to the withdrawal of treatment, but rather implies active management excluding KRT.

As mentioned previously, access to such care is limited in many countries 10 , 77 . Inequities in access to dialysis at the individual level are largely dependent on factors such as health literacy, education and socio-economic status, but also on the wealth and organization of the region in which the individual lives. Even when dialysis itself is reimbursed, a lack of individual financial resources can limit access to care. Moreover, elements such as gender, race or ethnicity and citizenship status 78 , 79 can influence an individual’s ability to access dialysis 80 . These factors impose a risk that patients who are most vulnerable are subject to further discrimination. In addition, without necessarily being perceived as such, dialysis delivery may be biased by the financial interests of dialysis providers or nephrologists, for example, by influencing whether a patient receives in-centre versus home dialysis, or resulting in the non-referral of patients on dialysis for transplantation or conservative care 81 , 82 .

A potential reason for the high utilization of in-centre haemodialysis worldwide is a lack of patient awareness regarding the alternatives. When surveyed, a considerable proportion of patients with kidney failure reported that information about options for KRT was inadequate 83 , 84 . Patient education and decision support could be strengthened and its quality benchmarked, with specific attention to low health literacy, which is frequent among patients on dialysis 85 . Inadequate patient education might result from a lack of familiarity with home dialysis (including PD) and candidacy bias among treating physicians and nurses. Appropriate education and training of medical professionals could help to solve this problem. However, the first step to increase uptake of home dialysis modalities is likely policy action undertaken by administrations, but stimulated by advocacy by patients and the nephrology community, as suggested by the higher prevalence of PD at a lower societal cost of regions that already have a PD-first policy in place 68 .

Although the provision of appropriate dialysis at the lowest possible cost to the individual is essential if access is to be improved 86 , approaches that unduly compromise the quality of care should be minimized or avoided. General frameworks to deal with this challenge can be provided by the nephrology community, but trade-offs between cost and quality may be necessary and will require consultation between authorities, medical professionals and patient representatives. Consideration must also be given to whether the societal and individual impact of providing dialysis would be greater than managing other societal health priorities (for example, malaria or tuberculosis) or investing in other sectors to improve health (for example, access to clean drinking water or improving road safety).

The most favourable approach in deciding the most appropriate course of action for an individual is shared decision-making 87 , which provides evidence-based information to patients and families about all available therapeutic options in the context of the local situation. Providing accurate and unbiased information to support such decision-making is especially relevant for conservative care, to avoid the perception that this approach is being recommended to save resources rather than to pursue optimal patient comfort. Properly done, shared decision-making should avoid coercion, manipulation, conflicts of interest and the provision of ‘futile dialysis’ to a patient for whom the harm outweighs the benefits, life expectancy is low or the financial burden is high 88 . However, the views of care providers do not always necessarily align with those of patients and their families, especially in multicultural environments 89 . Medical professionals are often not well prepared for shared decision-making, and thus proper training is essential 90 . Policy action is also required to create the proper ethical consensus and evidence-based frameworks at institutional and government levels 91 to guide decision-making in the context of dialysis care that can be adapted to meet local needs.

Box 1 Main ethical issues in dialysis

Equity in access to long-term dialysis

Inequities in the ability to access kidney replacement therapy exist worldwide; however, if dialysis is available, the ability to transition between different dialysis modalities should be facilitated as much as possible. Specific attention should be paid to the factors that most prominently influence access to dialysis, such as gender, ethnicity, citizenship status and socio-economic status

Impact of financial interests on dialysis delivery

Financial interests of dialysis providers or nephrologists should in no way influence the choice of dialysis modality and/or result in the non-referral of patients for transplantation or conservative care

Cost considerations

Local adaptations are needed to ensure that the costs of dialysis provision are as low as possible without compromising quality of care

The high cost of dialysis means that consideration must be given to whether the benefits obtained by dialysis outweigh those obtained by addressing other health-care priorities, such as malaria or tuberculosis

Shared decision-making

Shared decision-making, involving the patient and their family, is recommended as an approach to allow an informed choice of the most appropriate course to follow

Approaches to shared decision-making must be evidence based and adapted to local circumstances

Futile dialysis should be avoided

Proper training is required to prepare physicians for shared decision-making

Clinical outcomes to measure progress

Over the past six decades, the availability of long-term dialysis has prolonged the lives of millions of people worldwide, often by serving as a bridge to kidney transplantation. Yet, patients on dialysis continue to bear a high burden of disease, both from multimorbidity and owing to the fact that current dialysis modalities only partially replace the function of the native kidney, resulting in continued uraemia and its consequences. Thus, although dialysis prevents death from kidney failure, life expectancy is often poor, hospitalizations (particularly for cardiovascular events and infection) are frequent, symptom burden is high and health-related quality of life is low 22 , 92 , 93 .

Given the multitude of health challenges faced by patients on dialysis, it is necessary to develop a priority list of issues. For much of the past three decades, most of this prioritization was performed by nephrology researchers with the most effort to date focusing on approaches to reducing all-cause mortality and the risk of fatal and non-fatal cardiovascular events. However, despite the many interventions that have been tested, including increasing the dose of dialysis (in the HEMO and ADEMEX trials 94 , 95 ), increasing dialyser flux (in the HEMO trial and MPO trial 94 , 96 ), increasing haemodialysis frequency (for example, the FHN Daily and FHN Nocturnal trials 97 , 98 ), use of haemodiafiltration (the CONTRAST 99 , ESHOL 100 and TURKISH-OL-HDF trials 101 ), increasing the haemoglobin target (for example, the Normal Haematocrit Trial 102 ), use of non-calcium-based phosphate binders (for example, the DCOR trial 103 ), or lowering of the serum cholesterol level (for example, the 4D, AURORA and SHARP trials 104 , 105 , 106 ), none of these or other interventions has clearly reduced all-cause or cardiovascular mortality for patients on dialysis. These disappointments notwithstanding, it is important that the nephrology community perseveres in finding ways to improve patient outcomes.

In the past 5 years, nephrology researchers have increasingly engaged with patients to understand their priorities for meaningful outcomes that should be used to measure progress. The overarching message from this engagement is that although longevity is valued, many patients would prefer to reduce symptom burden and achieve maximal functional and social rehabilitation. This insight highlights the high symptom burden experienced by patients receiving long-term dialysis 92 , 93 , 96 , 107 . These symptoms arise as a consequence of the uraemic syndrome. Some of these symptoms, such as anorexia, nausea, vomiting, shortness of breath and confusion or encephalopathy, improve with dialysis initiation 108 , 109 , 110 , but many other symptoms, such as depression, anxiety and insomnia do not. Moreover, other symptoms, such as post-dialysis fatigue, appear after initiation of haemodialysis.

Of note, many symptoms of uraemic syndrome might relate to the persistence of protein-bound uraemic toxins and small peptides (so-called middle molecules) that are not effectively removed by the current dialysis modalities. The development of methods to improve the removal of those compounds is one promising approach to improving outcomes and quality of life for patients on dialysis, as discussed by other articles in this issue.

Patients on dialysis report an average of 9–12 symptoms at any given time 92 , 93 , 107 . To determine which of these should be prioritized for intervention, the Kidney Health Initiative used a two-step patient-focused process involving focus groups and an online survey to identify six symptoms that should be prioritized by the research community for intervention. These include three physical symptoms (fatigue, insomnia and cramps) and three mood symptoms (depression, anxiety and frustration) 111 . Parallel to these efforts, the Standardizing Outcomes in Nephrology Group (SONG) workgroup for haemodialysis ( SONG-HD ) has identified several tiers of outcomes that are important to patients, caregivers and health-care providers. Fatigue was identified as one of the four core outcomes, whereas depression, pain and feeling washed out after haemodialysis were identified as middle-tier outcomes 112 , 113 , 114 . Along these same lines, the SONG workgroup for PD ( SONG-PD ) identified the symptoms of fatigue, PD pain and sleep as important middle-tier outcomes 115 , 116 . Despite the importance of these symptoms to patients on dialysis, only a few studies have assessed the efficacy of behavioural and pharmacological treatments on depression 117 , 118 , 119 , 120 , 121 . Even more sobering is the observation that very few, if any, published studies have rigorously tested interventions for fatigue or any of the other symptoms. The nephrology community must now develop standardized and psychometrically robust measures that accurately capture symptoms and outcomes that are important to patients and ensure that these are captured in future clinical trials 122 , 123 .

Approaches to maximizing functional and social rehabilitation are also important to patients with kidney failure. In addition to the above-mentioned symptoms, SONG-HD identified ability to travel, ability to work, dialysis-free time, impact of dialysis on family and/or friends and mobility as important middle-tier outcomes 112 , 113 , 114 . SONG-PD identified life participation as one of five core outcomes, and impact on family and/or friends and mobility as other outcomes that are important to patients 115 , 116 . Given the importance of these outcomes to stakeholders, including patients, it is imperative that nephrology researchers develop tools to enable valid and consistent measurement of these outcomes and identify interventions that favourably modify these outcomes.

Fostering innovation

As described above, the status quo of dialysis care is suboptimal. Residual symptom burden, morbidity and mortality, and economic cost are all unacceptable, which begs the question of what steps are needed to change the established patterns of care. Patients are currently unable to live full and productive lives owing to the emotional and physical toll of dialysis, its intermittent treatment schedule, the dietary and fluid limitations, and their highly restricted mobility during treatment. Current technology requires most patients to travel to a dialysis centre, and current modalities are non-physiological, resulting in ‘washout’, which is defined as extensive fatigue, nausea and other adverse effects, caused by the build-up of uraemic toxins between treatments and the rapid removal of these solutes and fluids over 4-h sessions in the context of haemodialysis. LMICs face additional difficulties in the provision of dialysis owing to infrastructural requirements, the high cost of this treatment, the need for a constant power supply and the requirement for high volumes of purified water. For LMICs, innovations that focus on home-based, low-cost therapies that promote rehabilitation would be especially beneficial.

We contend that initiatives to transform dialysis outcomes for patients require both top-down efforts (for example, those that involve systems changes at the policy, regulatory, macroeconomic and organizational levels) and bottom-up efforts (for example, patient-led and patient-centred advocacy and individual teams of innovators). Top-down efforts are required to support, facilitate and de-risk the work of innovators. Conversely, patient-led advocacy is essential for influencing governmental and organizational policy change. Here, by considering how selected programmes are attempting to transform dialysis outcomes through innovation in support of high-value, high-quality care, we describe how top-down and bottom-up efforts can work synergistically to change the existing ecosystem of dialysis care (Fig.  2 ). The efforts described below are not an exhaustive list; rather, this discussion is intended to provide a representative overview of how the dialysis landscape is changing. Additional articles in this issue describe in more detail some of the bottom-up efforts of innovators to create wearable 124 , portable 125 , more environmentally friendly 126 and more physiological dialysis systems 127 , 128 , priorities from the patients’ perspective 129 , and the role of regulators in supporting innovation in the dialysis space 130 .

Initiatives to transform dialysis outcomes for patients require both top-down efforts (for example, those that involve systems-level changes at the policy, regulatory, macroeconomic and organizational level) and bottom-up efforts (for example, patient-led and patient-centred advocacy efforts and efforts from individual teams of innovators). Both of these efforts need to be guided by priorities identified by patients. Such an approach, focused on patient-centred innovation, has the potential to result in meaningful innovations that support high-quality, high-value care. NGOs, non-governmental organizations.

The Kidney Health Initiative

In 2012, the American Society of Nephrology (ASN) and the FDA established the KHI as an umbrella organization through which the kidney community can work collaboratively to remove barriers to the development of innovative drugs, devices, biologics and food products, in order to improve outcomes for people living with kidney diseases. To advance its mission, KHI has initiated a number of projects composed of multidisciplinary workgroups. A major accomplishment for the KHI was the establishment of a precompetitive environment to promote innovation while ensuring patient safety.

The KHI is the largest consortium in the kidney community, with over 100 member organizations including patient groups, health professional organizations, dialysis organizations, pharmaceutical and device companies, and government agencies. During the first 7 years of its existence, the KHI has launched and in many cases completed projects that have facilitated the development of new therapeutic options for dialysis patients (Box  2 ), as well as published position papers on topics relevant to innovation in haemodialysis care, including innovations in fluid management 131 and symptom management 132 in patients on haemodialysis, recommendations for clinical trial end points for vascular access 133 , perspectives on pragmatic trials in the haemodialysis population 134 and regulatory considerations for the use of haemodiafiltration 135 .

Box 2 Kidney Heath Initiative Projects that Support Dialysis Innovation

Patient and Family Partnership Council

Since 2015, the Kidney Health Initiative (KHI) Patient and Family Partnership Council (PFPC) has helped KHI stakeholders to engage and network with patients and patient organizations. The PFPC also advises industry and research partners of patient needs and preferences as new products are planned and developed. The PFPC continually emphasizes that innovation will only be successful if built around the needs of people with kidney disease and focused on improving their quality of life.

ESRD Data Standard Project

The aim of this project is to create a harmonized common data standard for kidney failure. The availability of a uniform data standard could accelerate the pace of scientific discovery, facilitate the creation of scientific registries for epidemiological surveillance and allow the development of common metrics for value-based health care.

Building Capacity to Incorporate Patient Preferences into the Development of Innovative Alternatives to kidney replacement therapy (KRT)

This project, which is supported by a 3-year contract with the FDA, is based on the premise that access to scientifically valid patient preference information could positively inform the decisions of industry and regulators as they design and review new devices for individuals with kidney failure. This project will collect patients’ preference information and also address a stated goal of the Advancing American Kidney Health (AAKH) initiative, which instructs the FDA to “develop a new survey to gain insight into patient preferences for new kidney failure treatments” 137 .

Clinical Trial Design to Support Innovative Approaches to KRT

This project is intended to facilitate coordinated efforts between regulators and the nephrology community to streamline the clinical development pathway. The primary objectives of the project are to define terminology for future KRT products (for example, wearable, portable, implantable and artificial kidney) and identify the most appropriate trial designs and end points for a variety of KRT products.

Advancing American Kidney Health

In July 2019, President Donald Trump signed an Executive Order on Advancing American Kidney Health (AAKH) 136 , which promises to fundamentally change the clinical care of kidney disease in general and kidney failure in particular. Components of the AAKH that are relevant to dialysis care include a directive for education and support programmes to promote awareness of kidney disease; a shift in the focus of reimbursement initiatives from in-centre haemodialysis to home therapies, transplantation and upstream CKD care; a system that rewards clinicians and dialysis facilities for providing a range of treatments for kidney failure, with the aim of increasing uptake of home dialysis and transplantation; and incentives for nephrology care teams to focus on reducing costs and improving outcomes by providing longitudinal care of patients with kidney disease.

Finally, and perhaps most radically, the AAKH calls on the US Department of Health and Human Services to support premarket approval of wearable and implantable artificial kidneys and welcomes other strategies to facilitate transformative innovation in dialysis devices. The AAKH directive specifically identifies the KidneyX programme (described below) as the vehicle with which to drive this innovation. The AAKH is the most ambitious US policy initiative ever undertaken to transform the care of patients with advanced kidney disease. Its agenda is still being shaped by the federal governmental agencies, with input from professional societies and other kidney community stakeholders, but this initiative provides a framework and support for transformative innovation in dialysis care.

The KHI Technology Roadmap and KidneyX

The KHI Technology Roadmap for Innovative Approaches to KRT, published in 2019 (ref. 137 ), is aimed at supporting the development of innovative dialysis devices by providing guidance on technical criteria, patient preferences, assessment of patient risk tolerances and regulatory, reimbursement and marketing considerations. Key strengths of the Roadmap include its patient-centred focus and the description of multiple solution pathways for different technologies (for example, portable, wearable and implantable devices that may be purely mechanical, cell-based or hybrid systems), each with appropriate timeline projections.

The KRT Roadmap was designed to be complementary to the Kidney Innovation Accelerator (also known as KidneyX). KidneyX is a public–private partnership between the Department of Health and Human Services and the ASN, and is aimed at accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care. The current major focus of KidneyX is to catalyse the fundamental redesign of dialysis, supported by a series of competitions. Phase I prizes focused on innovations in biomaterials, novel biosensors and safety monitors used for haemodialysis, as well as approaches for improved vascular access and the development of novel technologies that replicate kidney function more precisely than conventional dialysis. Phase II focuses on strategies to build and test prototype solutions or components of solutions that can replicate normal kidney function or improve haemodialysis access. KidneyX has also awarded a series of Patient Innovator Challenge prizes to patients who have proposed innovative solutions to problems emanating from their everyday experiences with kidney disease, including approaches to monitoring blood electrolyte levels and increasing the accessibility of patient education resources.

Dutch Kidney Foundation and Neokidney

The Dutch Kidney Foundation (DKF; or Nierstichting Nederland ) was founded in 1968. It supports research into the causes, prevention and treatment of kidney failure. Furthermore, it works to improve the quality of dialysis treatment and increase the number of kidney transplants. All projects are planned and organized with considerable patient involvement. The DKF also offers financial support to kidney research projects by large Dutch multi-centric consortia. These projects not only promote innovation in the Netherlands but also support trans-national European Union (EU)-supported projects with Dutch participation or leadership, such as Horizon 2020 and Horizon Europe.

Neokidney is a partnership between the DKF and several companies that specialize in miniaturization of dialysis equipment (including dialysis pumps) and sorbent technology for dialysate regeneration. This partnership is aimed at developing a small, portable haemodialysis device that will enable more frequent dialysis sessions, permit more flexibility for patients and improve patient quality of life, as well as reduce health-care costs. The first prototype is currently undergoing preclinical testing and is expected to be tested in humans soon, with the aim of demonstrating proof-of-concept for the first portable haemodialysis machine for daily use, requiring only a limited volume of dialysate. In addition to the development of miniaturization technologies, the partnership is also investigating the use of polymer membranes that permit combined filtration and absorption to achieve more effective haemodialysis 138 .

Nephrologists Transforming Hemodialysis Safety

Nephrologists Transforming Hemodialysis Safety (NTDS) is a collaborative initiative of the ASN and Centers for Disease Control and Prevention (CDC) that is aimed at addressing a specific complication inherent to contemporary dialysis — infection. In 2016, the CDC observed that 10% of dialysis patients in the USA died each year as the result of infections — most of which were preventable. The aim of NTDS is to develop and deploy innovations to achieve zero preventable infections in dialysis facilities across the USA. To reach this goal, NTDS uses a multi-pronged approach. For example, education strategies via publications 139 , 140 , 141 , 142 , 143 and webinars that address various aspects of infection prevention and standards of care, use of social media, development of an interactive chapter for trainees and clinicians, and invited lectures are aimed at ensuring that nephrologists, nurses, dialysis administrators and other professionals understand the risk of dialysis-related infections and evidence-based best working practices.

NTDS also interacts with experts in infection detection, prevention and treatment within federal, state and local health departments who can provide advice and assistance that is independent of the regulatory and potentially punitive arms of health departments. NTDS promotes the appropriate use of these experts in settings where expert advice is needed.

To promote leadership among physicians and nurses, NTDS is sponsoring a leadership academy to ensure that knowledge pertaining to evidence-based best working practices is applied to improve workflows in clinical practice. Effective leadership is a requirement, particularly in complex settings, to ensure that patient safety is prioritized and to motivate staff to use best practices.

NTDS are also collaborating with human factors engineers to study the workflows used in haemodialysis facilities and help to define ways of avoiding errors that lead to infection. As a first step in this process, NTDS and human factors engineers have spent time in various haemodialysis facilities to obtain information about the complex processes of care within those facilities, particularly with regard to the use of haemodialysis catheters and approaches to hand hygiene, injection safety and disinfection. Better understanding of current processes may lead to better workflow design.

Finally, based on lessons learned during the Ebola Crisis of 2014, an NTDS work group has designed processes to anticipate and respond to unexpected health-care crises. At the time of writing this Review, the NTDS team is working with CDC and haemodialysis organizations to anticipate and respond to the COVID-19 epidemic and its effect on dialysis care.

The Affordable Dialysis Prize

As discussed earlier, kidney failure remains a death sentence for many residents of LMICs owing to a lack of access to dialysis. In response to the pressing need for cost-effective dialysis options, the International Society of Nephrology in collaboration with the George Institute for Global Health and the Asian Pacific Society of Nephrology launched the Affordable Dialysis Prize in 2017 with the objective of facilitating the design of a dialysis system that would cost less than US $1,000, and provide treatment for less than $5 a day, yet be as safe and effective as existing dialysis systems. The prize was awarded to an engineer for a system that runs off solar power and includes a miniature distiller for producing pure water from any source via steam distillation. The purified water can then be mixed with electrolytes in empty PD bags to produce cheap, homemade dialysis solutions. This strategy identifies the lack of cheap, high-quality water as a major impediment to dialysis in LMICs and LICs. The system will ideally fit into a small suitcase 144 . This device remains under development with the goal of initiating clinical trials and ultimately commercializing the technology.

Empowered in-centre haemodialysis

For some patients with kidney failure, maintenance in-centre haemodialysis will always be the preferred treatment, and despite incentivizing policy levers, they will not be interested in pursuing home dialysis or kidney transplantation. In-centre self-dialysis (also referred to as empowered haemodialysis) originated in Sweden, when a young engineer named Christian Farman returned to haemodialysis in 2010 after a failed transplant. Farman began negotiating with his nurses to perform his own dialysis treatments with staff supervision and caught the attention of other patients 145 . Eventually, the process of self-dialysis within this centre — whereby coaches in the dialysis unit train people to take over control of their own treatments and health — grew so popular that a new unit was built at the hospital for self-dialysis patients only, with patient input into the design of the unit. Since then, self-care units were installed in several haemodialysis units in Europe and the USA, offering patients the autonomy and flexibility of home haemodialysis within the safety of a controlled environment. This approach to empowering patients has not been widely used to date, but deserves rigorous study and evaluation 146 .

Remote monitoring to support self-care

Telemedicine is defined as the electronic exchange of medical information between sites with the aim of improving a patient’s health. Telehealth encompasses a broader set of services such as the provision of educational content. New technologies have broadened the scope of telemedicine and telehealth applications and services, making these tools more accessible and useful in the care of patients who live remotely or have difficulty visiting a clinic. The range of services that can be delivered by telehealth now includes two-way interactive video, device data programming, asynchronous messaging , sensors for remote monitoring and portals to enable patients to access electronic health records. Although relatively understudied in haemodialysis patients to date, telehealth has the potential to increase the acceptance of home dialysis and improve patient satisfaction, while potentially decreasing costs and improving outcomes.

Telehealth and the remote monitoring of dialysis patients has become more commonplace in the past decade, particularly in Australia, where telehealth is used widely for patients receiving home dialysis. Telemedicine is also considered a support tool for kidney care in disaster situations such as earthquakes where many individuals in remote locations can be affected. Telemedicine has also been used for distance monitoring of patients receiving PD 147 , 148 . In the USA, the Bipartisan Budget Act of 2018 included provisions to expand telehealth coverage to include patients on home dialysis. This legislation allows patients on home dialysis to choose to have their monthly care-provider visits take place via telehealth, without geographic restrictions. The ongoing COVID-19 pandemic has also resulted in an unprecedented and rapid expansion in the use of telemedicine for providing health care in many regions worldwide, including for the care of patients undergoing in-centre haemodialysis. The experience gained during this pandemic has the potential to permanently embed telemedicine in health-care delivery in many health-care systems.

Although telehealth has considerable promise for the care of dialysis patients, the implementation of telehealth in clinical practice can be challenging 149 . Telehealth-guided digital interactions have the potential to improve outcomes through the provision of activities such as individualized patient-centred education, remote communication and data exchange, in-home clinical guidance and monitoring, assessment of prescription and/or treatment efficacy and adherence, real-time modification of treatments and early alerts for problems that require intervention, although all of these interventions need to be rigorously tested 150 .

The European Kidney Health Alliance

The European Kidney Health Alliance (EKHA) is a non-governmental organization based in Brussels, Belgium, which advocates for kidney patients and the nephrology community at relevant bodies of the EU and also at European national organizations. The EKHA represents all of the major stakeholders in kidney care, including physicians, patients, nurses and foundations. The actions of the EKHA are supported by a dedicated group of Members of European Parliament. Of note, according to the treaty of Lisbon 151 , health-care systems are the responsibility of the national authorities of EU countries, which limits the role of the European Commission to one of complementing national policies and fostering cooperation. The EKHA has undertaken several initiatives in the area of kidney care, mainly focusing on measures to decrease the costs of kidney care while maintaining quality of care and access for all appropriate candidates, and to reduce demand for dialysis by promoting efforts to prevent the progression of kidney disease, and encouraging kidney transplantation as the KRT of choice 66 , 152 . In 2021, the EKHA will focus on reimbursement strategies and access to KRT, especially home haemodialysis.

The Nephrology and Public Policy Committee is a similar initiative created by the European Renal Association–European Dialysis and Transplant Association (ERA–EDTA). This committee aims to translate important kidney-related clinical topics into public policy, including the search for novel biomarkers of CKD, improving transition between paediatric and adult nephrology, and improving collaboration between the ERA-EDTA Registry and the guidance body of the ERA-EDTA, European Renal Best Practice 153 .

Beating Kidney Disease

Together with the Dutch Federation for Nephrology and the Dutch Kidney Patients Association, the DKF has initiated a strategic agenda for research and innovation in the Netherlands. This initiative, called Beating Kidney Disease (Nierziekte de Baas) will promote four specific research areas 154 : prevention of kidney failure, including root causes such as other chronic diseases; personalized medicine including genome and big data analyses, and studies of rare diseases; patient-centred outcomes and quality of life, transplantation and home haemodialysis; and regenerative medicine including bio-artificial kidneys. In collaboration with the EKHA, the Beating Kidney Disease initiative will be proposed as a framework for future initiatives at the Directorate General for Health and Food Safety of the European Commission, and the European Commissioner of Health. Similar to European initiatives that have promoted transplantation 152 , 155 , 156 , these efforts will emphasize shifts in policy action to strengthen institutional frameworks, improve education, training and information, optimize registries, and ensure appropriate benchmarking in nephrology.

Conclusions

The past 50 years have seen rapid changes in how and to whom dialysis is provided. From a global perspective, the escalating numbers of patients who require dialysis mean that even current costs are not sustainable, and yet most people who develop kidney failure forego treatment owing to a lack of access, with millions of lives lost every year as a consequence. Also important, the limitations of current dialysis treatment in alleviating patient suffering, morbidity and mortality are now viewed as unacceptable. Consequently, patients, payors, regulators and health-care systems are increasingly demanding improved value, which can only come about through true patient-centred innovation that supports high-quality, high-value care. Substantial efforts are now underway to support requisite transformative changes. These efforts need to be catalysed, promoted and fostered through international collaboration and harmonization to ensure that in the future, people living with kidney failure have more and better treatment options than exist today.

Peitzman, S. J. Chronic dialysis and dialysis doctors in the United States: a nephrologist-historian’s perspective. Semin. Dial. 14 , 200–208 (2001).

Article   CAS   PubMed   Google Scholar  

Brescia, M. J., Cimino, J. E., Appel, K. & Hurwich, B. J. Chronic hemodialysis using venipuncture and a surgically created arteriovenous fistula. N. Engl. J. Med. 275 , 1089–1092 (1966).

Blagg, C. R. The early history of dialysis for chronic renal failure in the United States: a view from Seattle. Am. J. Kidney Dis. 49 , 482–496 (2007).

Article   PubMed   Google Scholar  

Scribner, B. H. Ethical problems of using artificial organs to sustain human life. Trans. Am. Soc. Artif. Intern. Organs 10 , 209–212 (1964).

CAS   PubMed   Google Scholar  

Blagg, D. C. R. From Miracle to Mainstream: Creating the World’s First Dialysis Organization (Northwest Kidney Centers, 2017).

Himmelfarb, J., Berns, A., Szczech, L. & Wesson, D. Cost, quality, and value: the changing political economy of dialysis care. J. Am. Soc. Nephrol. 18 , 2021–2027 (2007).

KDIGO. KDIGO 2012 clinical practice guideline for the evaluation and management of chronic kidney disease. Kidney Int. Suppl. 3 , 163 (2013).

Google Scholar  

Hole, B. et al. Supportive care for end-stage kidney disease: an integral part of kidney services across a range of income settings around the world. Kidney Int. Suppl. 10 , e86–e94 (2020).

Article   Google Scholar  

Bikbov, B. et al. Global, regional, and national burden of chronic kidney disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet 395 , 709–733 (2020).

Liyanage, T. et al. Worldwide access to treatment for end-stage kidney disease: a systematic review. Lancet 385 , 1975–1982 (2015).

Tonelli, M. et al. Framework for establishing integrated kidney care programs in low- and middle-income countries. Kidney Int. Suppl. 10 , e19–e23 (2020).

Pecoits-Filho, R. et al. Capturing and monitoring global differences in untreated and treated end-stage kidney disease, kidney replacement therapy modality, and outcomes. Kidney Int. Suppl. 10 , e3–e9 (2020).

Bello A. K. L. et al. Global Kidney Health Atlas: a report by the International Society of Nephrology on the current state of organization and structures for kidney care across the globe. https://www.kidneycareuk.org/documents/52/ISN_Global_kidney_health_atlas.pdf (2017).

White, S. et al. How can we achieve global equity in provision of renal replacement therapy? Bull. World Health Organ. 86 , 229–237 (2008).

Article   PubMed   PubMed Central   Google Scholar  

Bello, A. K. et al. Status of care for end stage kidney disease in countries and regions worldwide: international cross sectional survey. BMJ 367 , l5873 (2019).

Luxardo, R. et al. The epidemiology of renal replacement therapy in two different parts of the world: the Latin American Dialysis and Transplant Registry versus the European Renal Association-European Dialysis and Transplant Association Registry. Rev. Panam. Salud Publica 42 , e87 (2018).

United States Renal Data System. Volume 2: ESRD in the United States https://www.usrds.org/2018/download/2018_Volume_2_ESRD_in_the_US.pdf (2018).

Jha, V. et al. The state of nephrology in South Asia. Kidney Int. 95 , 31–37 (2019).

Barsoum, R. S., Khalil, S. S. & Arogundade, F. A. Fifty years of dialysis in Africa: challenges and progress. Am. J. Kidney Dis. 65 , 502–512 (2015).

Bello, A. K. et al. Assessment of Global Kidney Health Care Status. JAMA 317 , 1864–1881 (2017).

Fresenius Medical Care. Annual Report 2018: Care and Live. https://www.freseniusmedicalcare.com/fileadmin/data/com/pdf/Media_Center/Publications/Annual_Reports/FME_Annual-Report_2018.pdf (2018).

United States Renal Data System. US Renal Data System 2019 Annual Data Report: epidemiology of kidney disease in the United States. https://www.usrds.org/2019/view/USRDS_2019_ES_final.pdf (2019).

Liu, F. X. et al. A global overview of the impact of peritoneal dialysis first or favored policies: an opinion. Perit. Dial. Int. 35 , 406–420 (2015).

Article   CAS   PubMed   PubMed Central   Google Scholar  

Mehrotra, R. et al. Racial and ethnic disparities in use of and outcomes with home dialysis in the United States. J. Am. Soc. Nephrol. 27 , 2123–2134 (2016).

Li, P. K.-T. et al. Changes in the worldwide epidemiology of peritoneal dialysis. Nat. Rev. Nephrol. 13 , 90–103 (2017).

ANZDATA Registry. ANZDATA 42nd Annual Report 2019. https://www.anzdata.org.au/report/anzdata-42nd-annual-report-2019/ (2019).

Kramer, A. et al. The European Renal Association - European Dialysis and Transplant Association (ERA-EDTA) Registry annual report 2015: a summary. Clin. Kidney J. 11 , 108–122 (2018).

Anand, S., Bitton, A. & Gaziano, T. The gap between estimated incidence of end-stage renal disease and use of therapy. PLoS ONE 8 , e72860 (2013).

Modi, G. K. & Jha, V. The incidence of end-stage renal disease in India: a population-based study. Kidney Int. 70 , 2131–2133 (2006).

Robinson, B. M. et al. Factors affecting outcomes in patients reaching end-stage kidney disease worldwide: differences in access to renal replacement therapy, modality use, and haemodialysis practices. Lancet 388 , 294–306 (2016).

Antlanger, M. et al. Sex differences in kidney replacement therapy initiation and maintenance. Clin. J. Am. Soc. Nephrol. 14 , 1616 (2019).

Chan, K. E. et al. Early outcomes among those initiating chronic dialysis in the United States. Clin. J. Am. Soc. Nephro 6 , 2642–2649 (2011).

Article   CAS   Google Scholar  

Thamer, M. et al. Predicting early death among elderly dialysis patients: development and validation of a risk score to assist shared decision making for dialysis initiation. Am. J. Kidney Dis. 66 , 1024–1032 (2015).

Garcia-Garcia, G. et al. Survival among patients with kidney failure in Jalisco, Mexico. J. Am. Soc. Nephrol. 18 , 1922–1927 (2007).

Foster, B. J., Mitsnefes, M. M., Dahhou, M., Zhang, X. & Laskin, B. L. Changes in excess mortality from end stage renal disease in the United States from 1995 to 2013. Clin. J. Am. Soc. Nephrol. 13 , 91–99 (2018).

Storey, B. C. et al. Declining comorbidity-adjusted mortality rates in English patients receiving maintenance renal replacement therapy. Kidney Int. 93 , 1165–1174 (2018).

Fenton, S. S. et al. Hemodialysis versus peritoneal dialysis: a comparison of adjusted mortality rates. Am. J. Kidney Dis. 30 , 334–342 (1997).

Vonesh, E. F., Snyder, J. J., Foley, R. N. & Collins, A. J. The differential impact of risk factors on mortality in hemodialysis and peritoneal dialysis. Kidney Int. 66 , 2389–2401 (2004).

Mehrotra, R., Chiu, Y. W., Kalantar-Zadeh, K., Bargman, J. & Vonesh, E. Similar outcomes with hemodialysis and peritoneal dialysis in patients with end-stage renal disease. Arch. Intern. Med. 171 , 110–118 (2011).

Mehrotra, R., Devuyst, O., Davies, S. J. & Johnson, D. W. The current state of peritoneal dialysis. J. Am. Soc. Nephrol. 27 , 3238–3252 (2016).

Mehrotra, R. et al. Chronic peritoneal dialysis in the United States: declining utilization despite improving outcomes. J. Am. Soc. Nephrol. 18 , 2781–2788 (2007).

Modi, Z. J. et al. Risk of cardiovascular disease and mortality in young adults with end-stage renal disease: an analysis of the us renal data system. JAMA Cardiol. 4 , 353–362 (2019).

Wetmore, J. B. et al. Insights from the 2016 peer kidney care initiative report: still a ways to go to improve care for dialysis patients. Am. J. Kidney Dis. 71 , 123–132 (2018).

Skov Dalgaard, L. et al. Risk and prognosis of bloodstream infections among patients on chronic hemodialysis: a population-based cohort study. PLoS One 10 , e0124547 (2015).

Article   PubMed   PubMed Central   CAS   Google Scholar  

Nelveg-Kristensen, K. E., Laier, G. H. & Heaf, J. G. Risk of death after first-time blood stream infection in incident dialysis patients with specific consideration on vascular access and comorbidity. BMC Infect. Dis. 18 , 688 (2018).

Chaudry, M. S. et al. Risk of infective endocarditis in patients with end stage renal disease. Clin. J. Am. Soc. Nephrol. 12 , 1814–1822 (2017).

Pruthi, R., Steenkamp, R. & Feest, T. UK renal registry 16th annual report: chapter 8 survival and cause of death of UK adult patients on renal replacement therapy in 2012: national and centre-specific analyses. Nephron. Clin. Pract. 125 , 139–169 (2013).

Kucirka, L. M. et al. Association of race and age with survival among patients undergoing dialysis. JAMA 306 , 620–626 (2011).

CAS   PubMed   PubMed Central   Google Scholar  

van den Beukel, T. O. et al. The role of psychosocial factors in ethnic differences in survival on dialysis in The Netherlands. Nephrol. Dial. Transpl. 27 , 2472–2479 (2012).

Depner, T. et al. Dialysis dose and the effect of gender and body size on outcome in the HEMO study. Kidney Ing. 65 , 1386–1394 (2004).

Villar, E., Remontet, L., Labeeuw, M. & Ecochard, R. Effect of age, gender, and diabetes on excess death in end-stage renal failure. J. Am. Soc. Nephrol. 18 , 2125–2134 (2007).

Hecking, M. et al. Sex-specific differences in hemodialysis prevalence and practices and the male-to-female mortality rate: the dialysis outcomes and practice patterns study (DOPPS). PLoS Med. 11 , e1001750 (2014).

Erickson, K. F., Zhao, B., Ho, V. & Winkelmayer, W. C. Employment among patients starting dialysis in the United States. Clin. J. Am. Soc. Nephrol. 13 , 265–273 (2018).

Kurella Tamura, M. et al. Functional status of elderly adults before and after initiation of dialysis. N. Eng. J. Med. 361 , 1539–1547 (2009).

Daratha, K. B. et al. Risks of subsequent hospitalization and death in patients with kidney disease. Clin. J. Am. Soc. Nephrol. 7 , 409–416 (2012).

Davison, S. N. & Jhangri, G. S. Impact of pain and symptom burden on the health-related quality of life of hemodialysis patients. J. Pain. Symptom Manage. 39 , 477–485 (2010).

Eneanya, N. D. et al. Longitudinal patterns of health-related quality of life and dialysis modality: a national cohort study. BMC Nephrol. 20 , 7 (2019).

Ju, A. et al. Patient-reported outcome measures for fatigue in patients on hemodialysis: a systematic review. Am. J. Kidney Dis. 71 , 327–343 (2018).

Rhee, E. P. et al. Prevalence and persistence of uremic symptoms in incident dialysis patients. Kidney360 1 , 86–92 (2020).

Kimmel, P. L. & Peterson, R. A. Depression in patients with end-stage renal disease treated with dialysis: has the time to treat arrived? Clin. J. Am. Soc. Nephrol. 1 , 349–352 (2006).

Burnier, M., Pruijm, M., Wuerzner, G. & Santschi, V. Drug adherence in chronic kidney diseases and dialysis. Nephrol. Dial. Transpl. 30 , 39–44 (2015).

Viecelli, A. K. et al. Identifying critically important vascular access outcomes for trials in haemodialysis: an international survey with patients, caregivers and health professionals. Nephrol. Dial. Transpl. 35 , 657–668 (2020).

Ceretta, M. L. et al. Changes in co-morbidity pattern in patients starting renal replacement therapy in Europe-data from the ERA-EDTA registry. Nephrol. Dial. Transpl. 33 , 1794–1804 (2018).

Vanholder, R. et al. Reimbursement of dialysis: a comparison of seven countries. J. Am. Soc. Nephrol. 23 , 1291–1298 (2012).

Winkelmayer, W. C., Weinstein, M. C., Mittleman, M. A., Glynn, R. J. & Pliskin, J. S. Health economic evaluations: the special case of end-stage renal disease treatment. Med. Decis. Mak. 22 , 417–430 (2002).

Vanholder, R. et al. Reducing the costs of chronic kidney disease while delivering quality health care: a call to action. Nat. Rev. Nephrol. 13 , 393–409 (2017).

Klarenbach, S. & Manns, B. Economic evaluation of dialysis therapies. Semin. Nephrol. 29 , 524–532 (2009).

van der Tol, A., Lameire, N., Morton, R. L., Van Biesen, W. & Vanholder, R. An international analysis of dialysis services reimbursement. Clin. J. Am. Soc. Nephrol. 14 , 84–93 (2019).

Beaudry, A. et al. Cost of dialysis therapy by modality in Manitoba. Clin. J. Am. Soc. Nephrol. 13 , 1197–1203 (2018).

Golper, T. A. The possible impact of the US prospective payment system (“bundle”) on the growth of peritoneal dialysis. Perit. Dial. Int. 33 , 596–599 (2013).

Lin, E. et al. Home dialysis in the prospective payment system era. J. Am. Soc. Nephrol. 28 , 2993–3004 (2017).

Shen, J. I. et al. Expanded prospective payment system and use of and outcomes with home dialysis by race and ethnicity in the United States. Clin. J. Am. Soc. Nephrol. 14 , 1200–1212 (2019).

Wang, V. et al. Medicare’s new prospective payment system on facility provision of peritoneal dialysis. Clin. J. Am. Soc. Nephrol. 13 , 1833–1841 (2018).

Swanepoel, C. R., Wearne, N. & Okpechi, I. G. Nephrology in Africa–not yet uhuru. Nat. Rev. Nephrol. 9 , 610–622 (2013).

Wang, V., Vilme, H., Maciejewski, M. L. & Boulware, L. E. The economic burden of chronic kidney disease and end-stage renal disease. Semin. Nephrol. 36 , 319–330 (2016).

Martin, D. E. et al. A call for professional collaboration to address ethical challenges in nephrology. Nat Rev Nephrol. https://doi.org/10.1038/s41581-020-0295-4 (2020).

Harris, D. C. H. et al. Increasing access to integrated ESKD care as part of universal health coverage. Kidney Int. 95 , S1–S33 (2019).

Rodriguez, R. A. Dialysis for undocumented immigrants in the United States. Adv. Chronic Kidney Dis. 22 , 60–65 (2015).

Saunders, M. R., Lee, H., Maene, C., Schuble, T. & Cagney, K. A. Proximity does not equal access: racial disparities in access to high quality dialysis facilities. J. Racial Ethn. Health Disparities 1 , 291–299 (2014).

Shaikh, M. et al. Utilization, costs, and outcomes for patients receiving publicly funded hemodialysis in India. Kidney Int. 94 , 440–445 (2018).

Ladin, K. & Smith, A. K. Active medical management for patients with advanced kidney disease. JAMA Intern. Med. 179 , 313–315 (2019).

Boulware, L. E., Wang, V. & Powe, N. R. Improving access to kidney transplantation: business as usual or new ways of doing business? JAMA 322 , 931–933 (2019).

Van Biesen, W., van der Veer, S. N., Murphey, M., Loblova, O. & Davies, S. Patients’ perceptions of information and education for renal replacement therapy: an independent survey by the European Kidney Patients’ Federation on information and support on renal replacement therapy. PLoS ONE 9 , e103914 (2014).

Mehrotra, R., Marsh, D., Vonesh, E., Peters, V. & Nissenson, A. Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis. Kidney Int. 68 , 378–390 (2005).

Taylor, D. M. et al. A systematic review of the prevalence and associations of limited health literacy in CKD. Clin. J. Am. Soc. Nephrol. 12 , 1070–1084 (2017).

Vanholder, R., Van Biesen, W. & Lameire, N. Renal replacement therapy: how can we contain the costs? Lancet 383 , 1783–1785 (2014).

Moss, A. H. Revised dialysis clinical practice guideline promotes more informed decision-making. Clin. J. Am. Soc. Nephrol. 5 , 2380–2383 (2010).

Williams, A. W. et al. Critical and honest conversations: the evidence behind the “Choosing Wisely” campaign recommendations by the American Society of Nephrology. Clin. J. Am. Soc. Nephrol. 7 , 1664–1672 (2012).

Rinehart, A. Beyond the futility argument: the fair process approach and time-limited trials for managing dialysis conflict. Clin. J. Am. Soc. Nephrol. 8 , 2000–2006 (2013).

Ladin, K. et al. Characterizing approaches to dialysis decision making with older adults: a qualitative study of nephrologists. Clin. J. Am. Soc. Nephrol. 13 , 1188–1196 (2018).

Luyckx, V. A. et al. Developing the ethical framework of end-stage kidney disease care: from practice to policy. Kidney Int. Suppl. 10 , e72–e77 (2020).

Davison, S. N., Jhangri, G. S. & Johnson, J. A. Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: a simple assessment of symptom burden. Kidney Int. 69 , 1621–1625 (2006).

Weisbord, S. D. et al. Renal provider recognition of symptoms in patients on maintenance hemodialysis. Clin. J. Am. Soc. Nephrol. 2 , 960–967 (2007).

Eknoyan, G. et al. Effect of dialysis dose and membrane flux in maintenance hemodialysis. N. Engl. J. Med. 347 , 2010–2019 (2002).

Paniagua, R. et al. Effects of increased peritoneal clearances on mortality rates in peritoneal dialysis: ADEMEX, a prospective, randomized, controlled trial. J. Am. Soc. Nephrol. 13 , 1307–1320 (2002).

Locatelli, F. et al. Effect of membrane permeability on survival of hemodialysis patients. J. Am. Soc. Nephrol. 20 , 645–654 (2009).

Group, F. H. N. T. et al. In-center hemodialysis six times per week versus three times per week. N. Engl. J. Med. 363 , 2287–2300 (2010).

Rocco, M. V. et al. The effects of frequent nocturnal home hemodialysis: the frequent hemodialysis network nocturnal trial. Kidney Int. 80 , 1080–1091 (2011).

Grooteman, M. P. C. et al. Effect of online hemodiafiltration on all-cause mortality and cardiovascular outcomes. J. Am. Soc. Nephrol. 23 , 1087 (2012).

Farrington, K. & Davenport, A. The ESHOL study: hemodiafiltration improves survival - but how? Kidney Int. 83 , 979–981 (2013).

Maduell, F. et al. High-efficiency postdilution online hemodiafiltration reduces all-cause mortality in hemodialysis patients. J. Am. Soc. Nephrol. 24 , 487 (2013).

Besarab, A. et al. The effects of normal as compared with low hematocrit values in patients with cardiac disease who are receiving hemodialysis and epoetin. N. Engl. J. Med. 339 , 584–590 (1998).

Suki, W. N. et al. Effects of sevelamer and calcium-based phosphate binders on mortality in hemodialysis patients. Kidney Int. 72 , 1130–1137 (2007).

Wanner, C. et al. Atorvastatin in patients with type 2 diabetes mellitus undergoing hemodialysis. N. Engl. J. Med. 353 , 238–248 (2005).

Fellstrom, B. C. et al. Rosuvastatin and cardiovascular events in patients undergoing hemodialysis. N. Engl. J. Med. 360 , 1395–1407 (2009).

Baigent, C. et al. The effects of lowering LDL cholesterol with simvastatin plus ezetimibe in patients with chronic kidney disease (Study of Heart and Renal Protection): a randomised placebo-controlled trial. Lancet 377 , 2181–2192 (2011).

Abdel-Kader, K., Unruh, M. L. & Weisbord, S. D. Symptom burden, depression, and quality of life in chronic and end-stage kidney disease. Clin. J. Am. Soc. Nephrol. 4 , 1057–1064 (2009).

Mehrotra, R., Berman, N., Alistwani, A. & Kopple, J. D. Improvement of nutritional status after initiation of maintenance hemodialysis. Am. J. Kidney Dis. 40 , 133–142 (2002).

Pupim, L. B. et al. Improvement in nutritional parameters after initiation of chronic hemodialysis. Am. J. Kidney Dis. 40 , 143–151 (2002).

Rivara, M. B. et al. Changes in symptom burden and physical performance with initiation of dialysis in patients with chronic kidney disease. Hemodial. Int. 19 , 147–150 (2015).

Flythe, J. E. et al. Symptom prioritization among adults receiving in-center hemodialysis: a mixed methods study. Clin. J. Am. Soc. Nephrol. 13 , 735–745 (2018).

Tong, A. et al. Establishing core outcome domains in hemodialysis: report of the standardized outcomes in nephrology-hemodialysis (SONG-HD) consensus workshop. Am. J. Kidney Dis. 69 , 97–107 (2017).

Evangelidis, N. et al. Developing a set of core outcomes for trials in hemodialysis: an international Delphi survey. Am. J. Kidney Dis. 70 , 464–475 (2017).

Urquhart-Secord, R. et al. Patient and caregiver priorities for outcomes in hemodialysis: an international nominal group technique study. Am. J. Kidney Dis. 68 , 444–454 (2016).

Manera, K. E. et al. Patient and caregiver priorities for outcomes in peritoneal dialysis: multinational nominal group technique study. Clin. J. Am. Soc. Nephrol. 14 , 74–83 (2019).

Manera, K. E. et al. An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis. Kidney Int. 96 , 699–710 (2019).

Duarte, P. S., Miyazaki, M. C., Blay, S. L. & Sesso, R. Cognitive-behavioral group therapy is an effective treatment for major depression in hemodialysis patients. Kidney Int. 76 , 414–421 (2009).

Taraz, M. et al. Sertraline decreases serum level of interleukin-6 (IL-6) in hemodialysis patients with depression: results of a randomized double-blind, placebo-controlled clinical trial. Int. Immunopharmacol. 17 , 917–923 (2013).

Cukor, D. et al. Psychosocial intervention improves depression, quality of life, and fluid adherence in hemodialysis. J. Am. Soc. Nephrol. 25 , 196–206 (2014).

Friedli, K. et al. Sertraline versus placebo in patients with major depressive disorder undergoing hemodialysis: a randomized, controlled feasibility trial. Clin. J. Am. Soc. Nephrol. 12 , 280–286 (2017).

Mehrotra, R. et al. Comparative efficacy of therapies for treatment of depression for patients undergoing maintenance hemodialysis: a randomized clinical trial. Ann. Intern. Med. 170 , 369–379 (2019).

Mendu, M. L. et al. Measuring quality in kidney care: an evaluation of existing quality metrics and approach to facilitating improvements in care delivery. J. Am. Soc. Nephrol. 31 , 602–614 (2020).

Nair, D. & Wilson, F. P. Patient-reported outcome measures for adults with kidney disease: current measures, ongoing initiatives, and future opportunities for incorporation into patient-centered kidney care. Am. J. Kidney Dis. 74 , 791–802 (2019).

Himmelfarb, J. & Ratner, B. Wearable artificial kidney: problems, progress and prospects. Nat. Rev. Nephrol. in press [doi to be supplied]

Foo, M. W. Y. & Htay, H. Innovations in peritoneal dialysis. Nat. Rev. Nephrol. https://doi.org/10.1038/s41581-020-0283-8 (2020).

Agar, J. W. M. & Barraclough, K. A. Water use in dialysis: environmental considerations. Nat. Rev. Nephrol. https://doi.org/10.1038/s41581-020-0296-3 (2020).

Masereeuw, R. & Verhaar, M. C. Innovations in approaches to remove uraemic toxins. Nat. Rev. Nephrol. https://doi.org/10.1038/s41581-020-0299-0 (2020).

Geremia, I. & Stamatialis, D. Innovations in dialysis membranes for improved kidney replacement therapy. Nat. Rev. Nephrol. https://doi.org/10.1038/s41581-020-0293-6 (2020).

Gedney, N., Sipma, W. & Søndergaard, H. Innovations in dialysis: the user’s perspective. Nat. Rev. Nephrol. https://doi.org/10.1038/s41581-020-0292-7 (2020).

Wieringa, F. P., Sheldon, M. I. & Hidalgo-Simon, A. Regulatory approaches to stimulate innovative renal replacement therapies. Nat. Rev. Nephrol. https://doi.org/10.1038/s41581-020-0275-8 (2020).

Kidney Health Initiatve. Fostering Innovation in Fluid Management. https://khi.asn-online.org/uploads/KHI_InnovationsInFluidManagement.pdf (2019).

Flythe, J. E. et al. Fostering innovation in symptom management among hemodialysis patients. Clin. J. Am. Soc. Nephrol. 14 , 150 (2019).

Shenoy, S. et al. Clinical trial end points for hemodialysis vascular access. Clin. J. Am. Soc. Nephrol. 13 , 490 (2018).

Dember, L. M. et al. Pragmatic trials in maintenance dialysis: perspectives from the kidney health initiative. J. Am. Soc. Nephrol. 27 , 2955 (2016).

Canaud, B., Vienken, J., Ash, S. & Ward, R. A. Hemodiafiltration to address unmet medical needs ESKD patients. Clin. J. Am. Soc. Nephrol. 13 , 1435 (2018).

Trump, D. J. Executive Order on Advancing American Kidney Health. The White House https://www.whitehouse.gov/presidential-actions/executive-order-advancing-american-kidney-health/ (2019).

Kidney Health Initiative. Technology Roadmap for Innovative Approaches to Renal Replacement Therapy. https://www.asn-online.org/g/blast/files/KHI_RRT_Roadmap1.0_FINAL_102318_web.pdf (2018).

Tijink, M. S. L. et al. Mixed matrix membranes: a new asset for blood purification therapies. Blood Purif. 37 , 1–3 (2014).

Vijayan, A. & Boyce, J. M. 100% use of infection control procedures in hemodialysis facilities: call to action. Clin. J. Am. Soc. Nephrol. 13 , 671–673 (2018).

Wong, L. P. Achieving dialysis safety: the critical role of higher-functioning teams. Semin. Dial. 32 , 266–273 (2019).

Kliger, A. S. & Collins, A. J. Long overdue need to reduce infections with hemodialysis. Clin. J. Am. Soc. Nephrol. 12 , 1728–1729 (2017).

Kliger, A. S. Targeting zero infections in dialysis: new devices, yes, but also guidelines, checklists, and a culture of safety. J. Am. Soc. Nephrol. 29 , 1083–1084 (2018).

Collins, A. J. & Kliger, A. S. Urgent: stop preventable infections now. Clin. J. Am. Soc. Nephrol. 13 , 663–665 (2018).

The George Institute. World’s first affordable dialysis machine a finalist in 2017 Eureka Awards. https://www.georgeinstitute.org.au/media-releases/worlds-first-affordable-dialysis-machine-a-finalist-in-2017-eureka-awards (2017).

Institute for Healthcare Improvement. A patient directs his own care. http://www.ihi.org/resources/Pages/ImprovementStories/APatientDirectsHisOwnCareFarmanSelfDialysis.aspx (2020).

Shinkman, R. Is “empowered dialysis” the key to better outcomes? NEJM Catalyst Carryover https://doi.org/10.1056/CAT.18.0232 (2018).

Nayak, K. S., Ronco, C., Karopadi, A. N. & Rosner, M. H. Telemedicine and remote monitoring: supporting the patient on peritoneal dialysis. Perit. Dial. Int. 36 , 362–366 (2016).

Rohatgi, R., Ross, M. J. & Majoni, S. W. Telenephrology: current perspectives and future directions. Kidney Int. 92 , 1328–1333 (2017).

Lew, S. Q. & Sikka, N. Operationalizing telehealth for home dialysis patients in the United States. Am. J. Kidney Dis. 74 , 95–100 (2019).

Bieber, S. D. & Gadegbeku, C. A. A call to action for the kidney community: nephrologists’ perspective on advancing American kidney health. Clin. J. Am. Soc. Nephrol. 14 , 1799–1801 (2019).

Foundation for EU democracy. Consolidated Reader-Friendly Edition of the Treaty on European Union (TEU) and the Treaty on the Functioning of the European Union (TFEU) as amended by the Treaty of Lisbon (2007) Third edition. http://en.euabc.com/upload/books/lisbon-treaty-3edition.pdf (2009).

European Kidney Health Alliance. Thematic Network on Improving Organ Donation and Transplantation in the EU 2019. http://ekha.eu/wp-content/uploads/FINAL_Joint-Statement-of-the-Thematic-Network-on-Organ-Donation-and-Transplantation.pdf (2019).

Massy, Z. A. et al. Nephrology and public policy committee propositions to stimulate research collaboration in adults and children in Europe. Nephrol. Dial. Transpl. 34 , 1469–1480 (2019).

Beating kidney disease. A joint agenda for research and innovation. https://www.nierstichting.nl/media/filer_public/4d/6d/4d6d6b4e-ce56-4a4b-8ba2-f5ac957d0df8/beating_kidney_disease_-_joint_agenda_for_ri_june_2018.pdf (2018).

Matesanz, R., Marazuela, R., Coll, E., Mahillo, B. & Dominguez-Gil, B. About the Opt-Out system, live transplantation, and information to the public on organ donation in Spain… Y ole! Am. J. Transpl. 17 , 1695–1696 (2017).

Zivcic-Cosic, S. et al. Development of the Croatian model of organ donation and transplantation. Croat. Med. J. 54 , 65–70 (2013).

Download references

Author information

Authors and affiliations.

Kidney Research Institute, Seattle, WA, USA

Jonathan Himmelfarb & Rajnish Mehrotra

Division of Nephrology, Department of Medicine, University of Washington, Seattle, WA, USA

Nephrology Section, Department of Internal Medicine and Pediatrics, University Hospital, Ghent, Belgium and European Kidney Health Alliance (EKHA), Brussels, Belgium

Raymond Vanholder

Division of Nephrology, Department of Medicine, University of Calgary, Calgary, Alberta, Canada

Marcello Tonelli

You can also search for this author in PubMed   Google Scholar

Contributions

The authors contributed equally to all aspects of the article.

Corresponding author

Correspondence to Jonathan Himmelfarb .

Ethics declarations

Competing interests.

J.H. declares that The Kidney Research Institute and the Center for Dialysis Innovation at the University of Washington, which he directs, has received gift and grant support from the Northwest Kidney Centers, a not-for-profit dialysis provider. The Center for Dialysis Innovation has also received a Phase I prize from KidneyX, and a grant from the Veterans Administration. J.H. is also a founder and holds equity in AKTIV-X Technologies, Inc. R.V. has consulted for Baxter Healthcare, B. Braun and Neokidney. R.M. has received an honorarium from Baxter Healthcare and serves as a member of the Board of Trustees of the Northwest Kidney Centers. M.T. has received a lecture fee from B. Braun, which was donated to charity.

Additional information

Peer review information.

Nature Reviews Nephrology thanks M. Verhaar, who co-reviewed with M. van Gelder, and the other, anonymous, reviewer(s) for their contribution to the peer review of this work.

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Related links

Affordable Dialysis Prize: https://www.dialysisprize.org/

Dutch Kidney Foundation: https://www.narcis.nl/organisation/RecordID/ORG1238896/Language/en

ESRD Data Standard Project: https://khi.asn-online.org/projects/project.aspx?ID=78

European Kidney Health Alliance: http://ekha.eu/

Kidney Health Initiative: https://khi.asn-online.org/

KidneyX: https://www.kidneyx.org/

Neokidney: https://www.nextkidney.com/

Nephrologists Transforming Hemodialysis Safety: https://www.asn-online.org/ntds/

Nephrology and Public Policy Committee: https://www.era-edta.org/en/nppc/

Nierstichting Nederland: https://nierstichting.nl/

Patient and Family Partnership Council: https://khi.asn-online.org/pages/?ID=1

SONG-HD: https://songinitiative.org/projects/song-hd/

SONG-PD : https://songinitiative.org/projects/song-pd/

Standardizing Outcomes in Nephrology Group (SONG): https://songinitiative.org/

The total ‘real’ price of a given treatment, including the amount paid by the individual and the amount paid by society.

The ratio of the cost of the intervention compared with a relevant measure of its effect.

The share of treatment cost paid by society; that is, by government or insurers.

Money paid by governments or insurers to health-care providers for money spent on treatment.

The value of everything produced in that country at the prices prevailing in that country, usually expressed as gross domestic product.

The maximum price at or below which a society is prepared to buy a product.

The monetary value of all finished goods and services made within a country during a specific period.

Total amount of money spent by government on health care.

Engineers who design systems, devices, software and tools to fit human capabilities and limitations.

A communication method where the message is placed in a queue, and can be processed at a later time point.

Rights and permissions

Reprints and permissions

About this article

Cite this article.

Himmelfarb, J., Vanholder, R., Mehrotra, R. et al. The current and future landscape of dialysis. Nat Rev Nephrol 16 , 573–585 (2020). https://doi.org/10.1038/s41581-020-0315-4

Download citation

Accepted : 19 June 2020

Published : 30 July 2020

Issue Date : October 2020

DOI : https://doi.org/10.1038/s41581-020-0315-4

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

This article is cited by

Lipid parameters, adipose tissue distribution and prognosis prediction in chronic kidney disease patients.

• Hui-fen Chen
• Bing-jie Xiao

Lipids in Health and Disease (2024)

Renal rehabilitation learning in Japanese physical therapy schools: a fact-finding study

• Toshiki Kutsuna
• Yuhei Otobe
• Ryota Matsuzawa

Renal Replacement Therapy (2024)

The disruptor of telomeric silencing 1-like (DOT1L) promotes peritoneal fibrosis through the upregulation and activation of protein tyrosine kinases

• Yingfeng Shi

Molecular Biomedicine (2024)

The Intersectoral Coordination Unit for the Sustainable Intensification of Peritoneal Dialysis in Schleswig–Holstein (SKIP-SH) cohort study

• Hauke S. Wülfrath
• Thorben Schrumpf
• Benedikt Kolbrink

BMC Nephrology (2024)

Quality of life and nutritional status in peritoneal dialysis patients: a cross-sectional study from Palestine

• Dania Haddad
• Inad Nawajah

Quick links

• Explore articles by subject
• Guide to authors
• Editorial policies

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings
• My Bibliography
• Collections
• Citation manager

Save citation to file

Email citation, add to collections.

• Create a new collection
• Add to an existing collection

Add to My Bibliography

Your saved search, create a file for external citation management software, your rss feed.

• Search in PubMed
• Search in NLM Catalog
• Add to Search

A case management model to improve hemodialysis outpatient outcomes

Affiliation.

• 1 Nephrology Division, Department of Medicine, Massachusetts General Hospital (MGH), Boston, Massachusetts 02114, USA. [email protected]
• PMID: 17403178
• DOI: 10.1111/j.1542-4758.2007.00176.x

Optimal outpatient dialysis care is often difficult to achieve and a case management model to augment conventionally applied nursing and physician resources focusing on continuous quality improvement presents a possible solution to improving outcomes in this setting. We applied this model to patients followed by our physician group. Continuous quality improvement data generated from the dialysis unit database were used to analyze outcomes in patients enrolled in this model. Data from the cohort of patients followed in 2003 served as the reference source for comparative purposes. The nurse case manager assumed responsibility during the second quarter of 2004. Comparing outcomes data from 2005 with data from 2003, we were able to achieve a 3.12% improvement in the annualized mean percent crude mortality per 100 patient years (p<0.003). There was a 3.46-day trend to improvement in patient hospital days per year (p<0.06). The percentage of catheters used as primary access decreased by 9.59% (p<0.025), and the percentage of patients meeting an eKdrt/V goal > or =1.2 increased by 15.33% to 92.37% (p<0.001). These data appear to support the utility of a case manager model in our system.

PubMed Disclaimer

Similar articles

• Case mix, outcome and activity for patients admitted to intensive care units requiring chronic renal dialysis: a secondary analysis of the ICNARC Case Mix Programme Database. Hutchison CA, Crowe AV, Stevens PE, Harrison DA, Lipkin GW. Hutchison CA, et al. Crit Care. 2007;11(2):R50. doi: 10.1186/cc5785. Crit Care. 2007. PMID: 17451605 Free PMC article.
• Hemodialysis facility-based quality-of-care indicators and facility-specific patient outcomes. Lacson E Jr, Wang W, Lazarus JM, Hakim RM. Lacson E Jr, et al. Am J Kidney Dis. 2009 Sep;54(3):490-7. doi: 10.1053/j.ajkd.2009.01.260. Epub 2009 Apr 29. Am J Kidney Dis. 2009. PMID: 19406544
• Tunneled internal jugular catheters in adult patients: comparison of outcomes in hemodialysis versus infusion catheters. Peynircioglu B, Ozkan F, Canyigit M, Cil BE, Balkanci F. Peynircioglu B, et al. Acta Radiol. 2007 Jul;48(6):613-9. doi: 10.1080/02841850701342104. Acta Radiol. 2007. PMID: 17611867
• Assessment of health-related quality of life after surgical treatment of focal symptomatic spinal stenosis compared with osteoarthritis of the hip or knee. Rampersaud YR, Ravi B, Lewis SJ, Stas V, Barron R, Davey R, Mahomed N. Rampersaud YR, et al. Spine J. 2008 Mar-Apr;8(2):296-304. doi: 10.1016/j.spinee.2007.05.003. Epub 2007 Jun 18. Spine J. 2008. PMID: 17669690
• Structured review: evaluating the effectiveness of nurse case managers in improving health outcomes in three major chronic diseases. Sutherland D, Hayter M. Sutherland D, et al. J Clin Nurs. 2009 Nov;18(21):2978-92. doi: 10.1111/j.1365-2702.2009.02900.x. Epub 2009 Sep 11. J Clin Nurs. 2009. PMID: 19747197 Review.
• Search in MeSH

Related information

• Cited in Books

LinkOut - more resources

Full text sources.

• Ovid Technologies, Inc.
• MedlinePlus Health Information

• Citation Manager

NCBI Literature Resources

MeSH PMC Bookshelf Disclaimer

The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Unauthorized use of these marks is strictly prohibited.

Information

• Author Services

Initiatives

You are accessing a machine-readable page. In order to be human-readable, please install an RSS reader.

All articles published by MDPI are made immediately available worldwide under an open access license. No special permission is required to reuse all or part of the article published by MDPI, including figures and tables. For articles published under an open access Creative Common CC BY license, any part of the article may be reused without permission provided that the original article is clearly cited. For more information, please refer to https://www.mdpi.com/openaccess .

Feature papers represent the most advanced research with significant potential for high impact in the field. A Feature Paper should be a substantial original Article that involves several techniques or approaches, provides an outlook for future research directions and describes possible research applications.

Feature papers are submitted upon individual invitation or recommendation by the scientific editors and must receive positive feedback from the reviewers.

Editor’s Choice articles are based on recommendations by the scientific editors of MDPI journals from around the world. Editors select a small number of articles recently published in the journal that they believe will be particularly interesting to readers, or important in the respective research area. The aim is to provide a snapshot of some of the most exciting work published in the various research areas of the journal.

Original Submission Date Received: .

• Active Journals
• Find a Journal
• Journal Proposal
• Proceedings Series
• For Authors
• For Reviewers
• For Editors
• For Librarians
• For Publishers
• For Societies
• For Conference Organizers
• Open Access Policy
• Institutional Open Access Program
• Special Issues Guidelines
• Editorial Process
• Research and Publication Ethics
• Article Processing Charges
• Testimonials
• Preprints.org
• SciProfiles
• Encyclopedia

Article Menu

• Subscribe SciFeed
• Recommended Articles
• Google Scholar
• on Google Scholar
• Table of Contents

Find support for a specific problem in the support section of our website.

Please let us know what you think of our products and services.

Visit our dedicated information section to learn more about MDPI.

JSmol Viewer

Prevalence of fabry disease in patients on dialysis in france.

1. Introduction

2.1. patients, 2.2. biochemical screenings and genetic analyses, 2.2.1. patient 1: no fd, 2.2.2. patient 2: no fd, 2.2.3. patient 3: no fd, 2.2.4. patient 4: no fd, 2.2.5. patient 5: confirmed fd, 2.3. prevalence of fabry disease in dialysis patients, 3. discussion, 4. patients and methods, 4.1. context, 4.2. study design and ethics statement, 4.3. subjects, 4.4. biochemical methods, 4.4.1. blood spot tests, 4.4.2. diagnostic algorithm, 4.4.3. α-gala activity determination, 4.4.4. lyso-gb 3 determination, 4.5. genetic analysis, 4.6. diagnosis validation committee, 4.7. statistical analysis, author contributions, institutional review board statement, informed consent statement, data availability statement, acknowledgments, conflicts of interest.

• Germain, D.P. Fabry disease. Orphanet J. Rare Dis. 2010 , 5 , 30. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Spada, M.; Baron, R.; Elliott, P.M.; Falissard, B.; Hilz, M.J.; Monserrat, L.; Tøndel, C.; Tylki-Szymańska, A.; Wanner, C.; Germain, D.P. The effect of enzyme replacement therapy on clinical outcomes in paediatric patients with Fabry disease—A systematic literature review by a European panel of experts. Mol. Genet. Metab. 2019 , 126 , 212–223. [ Google Scholar ] [ CrossRef ]
• Terryn, W.; Cochat, P.; Froissart, R.; Ortiz, A.; Pirson, Y.; Poppe, B.; Serra, A.; Van Biesen, W.; Vanholder, R.; Wanner, C. Fabry nephropathy: Indications for screening and guidance for diagnosis and treatment by the European Renal Best Practice. Nephrol. Dial. Transplant. 2013 , 28 , 505–517. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Pieroni, M.; Namdar, M.; Olivotto, I.; Desnick, R.J. Anderson-Fabry disease management: Role of the cardiologist. Eur. Heart J. 2024 , 45 , 1395–1409. [ Google Scholar ] [ CrossRef ]
• Pisani, A.; Visciano, B.; Imbriaco, M.; Di Nuzzi, A.; Mancini, A.; Marchetiello, C.; Riccio, E. The kidney in Fabry’s disease. Clin. Genet. 2014 , 86 , 301–309. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Ortiz, A.; Cianciaruso, B.; Cizmarik, M.; Germain, D.P.; Mignani, R.; Oliveira, J.P.; Villalobos, J.; Vujkovac, B.; Waldek, S.; Wanner, C.; et al. End-stage renal disease in patients with Fabry disease: Natural history data from the Fabry Registry. Nephrol. Dial. Transplant. 2010 , 25 , 769–775. [ Google Scholar ] [ CrossRef ]
• Rost, N.S.; Cloonan, L.; Kanakis, A.S.; Fitzpatrick, K.M.; Azzariti, D.R.; Clarke, V.; Lourenco, C.M.; Germain, D.P.; Politei, J.M.; Homola, G.A.; et al. Determinants of white matter hyperintensity burden in patients with Fabry disease. Neurology 2016 , 86 , 1880–1886. [ Google Scholar ] [ CrossRef ]
• Echevarria, L.; Benistan, K.; Toussaint, A.; Dubourg, O.; Hagege, A.; Eladari, D.; Jabbour, F.; Beldjord, C.; De Mazancourt, P.; Germain, D.P. X-chromosome inactivation in female patients with Fabry disease. Clin. Genet. 2016 , 89 , 44–54. [ Google Scholar ] [ CrossRef ]
• Di Risi, T.; Vinciguerra, R.; Cuomo, M.; Della Monica, R.; Riccio, E.; Cocozza, S.; Imbriaco, M.; Duro, G.; Pisani, A.; Chiariotti, L. DNA methylation impact on Fabry disease. Clin. Epigenet 2021 , 13 , 24. [ Google Scholar ] [ CrossRef ]
• Germain, D.P.; Altarescu, G.; Barriales-Villa, R.; Mignani, R.; Pawlaczyk, K.; Pieruzzi, F.; Terryn, W.; Vujkovac, B.; Ortiz, A. An expert consensus on practical clinical recommendations and guidance for patients with classic Fabry disease. Mol. Genet. Metab. 2022 , 137 , 49–61. [ Google Scholar ] [ CrossRef ]
• Boutin, M.; Lavoie, P.; Beaudon, M.; Kabala Ntumba, G.; Bichet, D.G.; Maranda, B.; Auray-Blais, C. Mass Spectrometry Analysis of Globotriaosylsphingosine and Its Analogues in Dried Blood Spots. Int. J. Mol. Sci. 2023 , 24 , 3223. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Schiffmann, R.; Hughes, D.A.; Linthorst, G.E.; Ortiz, A.; Svarstad, E.; Warnock, D.G.; West, M.L.; Wanner, C.; Conference Participants. Screening, diagnosis, and management of patients with Fabry disease: Conclusions from a “kidney disease: Improving Global Outcomes” (KDIGO) Controversies Conference. Kidney Int. 2017 , 91 , 284–293. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Moiseev, S.; Tao, E.; Moiseev, A.; Bulanov, N.; Filatova, E.; Fomin, V.; Germain, D.P. The Benefits of Family Screening in Rare Diseases: Genetic Testing Reveals 165 New Cases of Fabry Disease among At-Risk Family Members of 83 Index Patients. Genes 2022 , 13 , 1619. [ Google Scholar ] [ CrossRef ]
• Nakao, S.; Kodama, C.; Takenaka, T.; Tanaka, A.; Yasumoto, Y.; Yoshida, A.; Kanzaki, T.; Enriquez, A.L.; Eng, C.M.; Tanaka, H.; et al. Fabry disease: Detection of undiagnosed hemodialysis patients and identification of a “renal variant” phenotype. Kidney Int. 2003 , 64 , 801–807. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Linthorst, G.E.; Hollak, C.E.M.; Korevaar, J.C.; Van Manen, J.G.; Aerts, J.M.F.G.; Boeschoten, E.W. alpha-Galactosidase A deficiency in Dutch patients on dialysis: A critical appraisal of screening for Fabry disease. Nephrol. Dial. Transplant. 2003 , 18 , 1581–1584. [ Google Scholar ] [ CrossRef ]
• Bekri, S.; Ghafari, T.; Jaeger, P. Fabry’s disease: Role of screening in populations at risk, in the image of chronic hemodialyzed patients. Rev. Med. Suisse Romande 2004 , 124 , 677–678. [ Google Scholar ]
• Kotanko, P.; Kramar, R.; Devrnja, D.; Paschke, E.; Voigtländer, T.; Auinger, M.; Demmelbauer, K.; Lorenz, M.; Hauser, A.-C.; Kofler, H.-J.D.; et al. Results of a nationwide screening for Anderson-Fabry disease among dialysis patients. J. Am. Soc. Nephrol. 2004 , 15 , 1323–1329. [ Google Scholar ] [ CrossRef ]
• Ichinose, M.; Nakayama, M.; Ohashi, T.; Utsunomiya, Y.; Kobayashi, M.; Eto, Y. Significance of screening for Fabry disease among male dialysis patients. Clin. Exp. Nephrol. 2005 , 9 , 228–232. [ Google Scholar ] [ CrossRef ]
• Tanaka, M.; Ohashi, T.; Kobayashi, M.; Eto, Y.; Miyamura, N.; Nishida, K.; Araki, E.; Itoh, K.; Matsushita, K.; Hara, M.; et al. Identification of Fabry’s disease by the screening of alpha-galactosidase A activity in male and female hemodialysis patients. Clin. Nephrol. 2005 , 64 , 281–287. [ Google Scholar ] [ CrossRef ]
• Merta, M.; Reiterova, J.; Ledvinova, J.; Poupetová, H.; Dobrovolny, R.; Rysavá, R.; Maixnerová, D.; Bultas, J.; Motáň, J.; Slivkova, J.; et al. A nationwide blood spot screening study for Fabry disease in the Czech Republic haemodialysis patient population. Nephrol. Dial. Transplant. 2007 , 22 , 179–186. [ Google Scholar ] [ CrossRef ]
• Terryn, W.; Poppe, B.; Wuyts, B.; Claes, K.; Maes, B.; Verbeelen, D.; Maixnerová, D.; Bultas, J.; Motan, J.; Slivkova, J.; et al. Two-tier approach for the detection of alpha-galactosidase A deficiency in a predominantly female haemodialysis population. Nephrol. Dial. Transplant. 2008 , 23 , 294–300. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• De Schoenmakere, G.; Poppe, B.; Wuyts, B.; Claes, K.; Cassiman, D.; Maes, B.; Verbeelen, D.; Vanholder, R.; Kuypers, D.R.; Lameire, N.; et al. Two-tier approach for the detection of alpha-galactosidase A deficiency in kidney transplant recipients. Nephrol. Dial. Transplant. 2008 , 23 , 4044–4048. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Kleinert, J.; Kotanko, P.; Spada, M.; Pagliardini, S.; Paschke, E.; Paul, K.; Voigtländer, T.; Wallner, M.; Kramar, R.; Stummvoll, H.-K.; et al. Anderson-Fabry disease: A case-finding study among male kidney transplant recipients in Austria. Transpl. Int. 2009 , 22 , 287–292. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Andrade, J.; Waters, P.J.; Singh, R.S.; Levin, A.; Toh, B.-C.; Vallance, H.D.; Sirrs, S. Screening for Fabry disease in patients with chronic kidney disease: Limitations of plasma alpha-galactosidase assay as a screening test. Clin. J. Am. Soc. Nephrol. 2008 , 3 , 139–145. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Porsch, D.B.; Nunes, A.C.F.; Milani, V.; Rossato, L.B.; Mattos, C.B.; Tsao, M.; Netto, C.; Burin, M.; Pereira, F.; Matte, Ú.; et al. Fabry disease in hemodialysis patients in southern Brazil: Prevalence study and clinical report. Ren. Fail. 2008 , 30 , 825–830. [ Google Scholar ] [ CrossRef ]
• Gaspar, P.; Herrera, J.; Rodrigues, D.; Cerezo, S.; Delgado, R.; Andrade, C.F.; Forascepi, R.; Macias, J.; del Pino, M.D.; Prados, M.D.; et al. Frequency of Fabry disease in male and female haemodialysis patients in Spain. BMC Med. Genet. 2010 , 11 , 19. [ Google Scholar ] [ CrossRef ]
• Maruyama, H.; Takata, T.; Tsubata, Y.; Tazawa, R.; Goto, K.; Tohyama, J.; Narita, I.; Yoshioka, H.; Ishii, S. Screening of male dialysis patients for fabry disease by plasma globotriaosylsphingosine. Clin. J. Am. Soc. Nephrol. 2013 , 8 , 629–636. [ Google Scholar ] [ CrossRef ]
• Saito, O.; Kusano, E.; Akimoto, T.; Asano, Y.; Kitagawa, T.; Suzuki, K.; Ishige, N.; Akiba, T.; Saito, A.; Ishimura, E.; et al. Prevalence of Fabry disease in dialysis patients: Japan Fabry disease screening study (J-FAST). Clin. Exp. Nephrol. 2016 , 20 , 284–296. [ Google Scholar ] [ CrossRef ]
• Sodre, L.S.S.; Huaira, R.M.N.H.; Bastos, M.G.; Colugnati, F.A.B.; Coutinho, M.P.; Fernandes, N.M.D.S. Screening for Fabry Disease in Kidney Disease: A Cross-Sectional Study in Males and Females. Kidney Blood Press. Res. 2017 , 42 , 1258–1265. [ Google Scholar ] [ CrossRef ]
• Moiseev, S.; Fomin, V.; Savostyanov, K.; Pushkov, A.; Moiseev, A.; Svistunov, A.; Namazova-Baranova, L. The Prevalence and Clinical Features of Fabry Disease in Hemodialysis Patients: Russian Nationwide Fabry Dialysis Screening Program. Nephron 2019 , 141 , 249–255. [ Google Scholar ] [ CrossRef ]
• Yalın, S.F.; Eren, N.; Sinangil, A.; Yilmaz, V.T.; Tatar, E.; Ucar, A.R.; Sevinc, M.; Can, Ö.; Gurkan, A.; Arik, N.; et al. Fabry Disease Prevalence in Renal Replacement Therapy in Turkey. Nephron 2019 , 142 , 26–33. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Frabasil, J.; Durand, C.; Sokn, S.; Gaggioli, D.; Carozza, P.; Carabajal, R.; Politei, J.; Schenone, A.B. Prevalence of Fabry disease in male dialysis patients: Argentinean screening study. JIMD Rep. 2019 , 48 , 45–52. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Jahan, S.; Sarathchandran, S.; Akhter, S.; Goldblatt, J.; Stark, S.; Crawford, D.; Mallett, A.; Thomas, M. Prevalence of Fabry disease in dialysis patients: Western Australia Fabry disease screening study—The FoRWARD study. Orphanet J. Rare Dis. 2020 , 15 , 10. [ Google Scholar ] [ CrossRef ]
• Alhemyadi, S.A.; Elawad, M.; Fourtounas, K.; Abdrabbou, Z.; Alaraki, B.; Younis, S.; Nawaz, Z.; Alqurashi, S.; Mohamed, S. Screening for Fabry disease among 619 hemodialysis patients in Saudi Arabia. Saudi Med. J. 2020 , 41 , 813–818. [ Google Scholar ] [ CrossRef ]
• Nagata, A.; Nasu, M.; Kaida, Y.; Nakayama, Y.; Kurokawa, Y.; Nakamura, N.; Shibata, R.; Hazama, T.; Tsukimura, T.; Togawa, T.; et al. Screening of Fabry disease in patients with chronic kidney disease in Japan. Nephrol. Dial. Transplant. 2021 , 37 , 115–125. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Vigneau, C.; Germain, D.P.; Larmet, D.; Jabbour, F.; Hourmant, M.; SNOUFY Investigators Group. Screening for Fabry disease in male patients with end-stage renal disease in western France. Nephrol. Ther. 2021 , 17 , 180–184. [ Google Scholar ] [ CrossRef ]
• Mallett, A.; Kearey, P.J.; Cameron, A.; Healy, H.G.; Denaro, C.; Thomas, M.; Lee, V.W.; Stark, S.L.; Fuller, M.; Wang, Z.; et al. The prevalence of Fabry disease in a statewide chronic kidney disease cohort—Outcomes of the aCQuiRE (Ckd.Qld fabRy Epidemiology) study. BMC Nephrol. 2022 , 23 , 169. [ Google Scholar ] [ CrossRef ]
• Cho, E.; Park, J.T.; Yoo, T.H.; Kim, S.W.; Park, C.W.; Han, S.S.; Kim, Y.H.; Kwon, Y.J. Frequency of Fabry disease in chronic kidney disease patients including patients on renal replacement therapy in Korea. Kidney Res. Clin. Pract. 2024 , 43 , 71–81. [ Google Scholar ] [ CrossRef ]
• Doheny, D.; Srinivasan, R.; Pagant, S.; Chen, B.; Yasuda, M.; Desnick, R.J. Fabry Disease: Prevalence of affected males and heterozygotes with pathogenic GLA mutations identified by screening renal, cardiac and stroke clinics, 1995–2017. J. Med. Genet. 2018 , 55 , 261–268. [ Google Scholar ] [ CrossRef ]
• Capuano, I.; Garofalo, C.; Buonanno, P.; Pinelli, M.; Di Risi, T.; Feriozzi, S.; Riccio, E.; Pisani, A. Identifying Fabry patients in dialysis population: Prevalence of GLA mutations by renal clinic screening, 1995–2019. J. Nephrol. 2020 , 33 , 569–581. [ Google Scholar ] [ CrossRef ]
• Battaglia, Y.; Fiorini, F.; Azzini, C.; Esposito, P.; De Vito, A.; Granata, A.; Storari, A.; Mignani, R. Deficiency in the Screening Process of Fabry Disease: Analysis of Chronic Kidney Patients Not on Dialysis. Front. Med. 2021 , 8 , 640876. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Germain, D.P.; Levade, T.; Hachulla, E.; Knebelmann, B.; Lacombe, D.; Leguy Seguin, V.; Nguyen, K.; Noël, E.; Rabès, J.-P. Challenging the traditional approach for interpreting genetic variants: Lessons from Fabry disease. Clin. Genet. 2022 , 101 , 390–402. [ Google Scholar ] [ CrossRef ]
• Linares, D.; Luna, B.; Loayza, E.; Taboada, G.; Ramaswami, U. Prevalence of Fabry disease in patients with chronic kidney disease: A systematic review and meta-analysis. Mol Genet Metab. 2023 , 140 , 107714. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Houge, G.; Langeveld, M.; Oliveira, J.P. GLA insufficiency should not be called Fabry disease. Eur. J. Hum. Genet. 2024 . [ Google Scholar ] [ CrossRef ]
• Duro, G.; Zizzo, C.; Cammarata, G.; Burlina, A.; Burlina, A.; Polo, G.; Scalia, S.; Oliveri, R.; Sciarrino, S.; Francofonte, D.; et al. Mutations in the GLA Gene and LysoGb3: Is It Really Anderson-Fabry Disease ? Int. J. Mol. Sci. 2018 , 19 , 3726. [ Google Scholar ] [ CrossRef ]
• Germain, D.P.; Poenaru, L. Fabry Disease: Identification of novel alpha-galactosidase A mutations and molecular carrier detection by use of fluorescent chemical cleavage of mismatches. Biochem. Biophys. Res. Commun. 1999 , 257 , 708–713. [ Google Scholar ] [ CrossRef ]
• Havndrup, O.; Christiansen, M.; Stoevring, B.; Jensen, M.; Hoffman-Bang, J.; Andersen, P.S.; Hasholt, L.; Nørremølle, A.; Feldt-Rasmussen, U.; Køber, L.; et al. Fabry disease mimicking hypertrophic cardiomyopathy: Genetic screening needed for establishing the diagnosis in women. Eur. J. Heart Fail. 2010 , 12 , 535–540. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Oder, D.; Vergho, D.; Ertl, G.; Wanner, C.; Nordbeck, P. Case report of a 45-year old female Fabry disease patient carrying two alpha-galactosidase A gene mutation alleles. BMC Med. Genet. 2016 , 17 , 46. [ Google Scholar ] [ CrossRef ]
• Froissart, R.; Guffon, N.; Vanier, M.T.; Desnick, R.J.; Maire, I. Fabry disease: D313Y is an alpha-galactosidase A sequence variant that causes pseudodeficient activity in plasma. Mol. Genet. Metab. 2003 , 80 , 307–314. [ Google Scholar ] [ CrossRef ]
• Germain, D.P.; Oliveira, J.P.; Bichet, D.; Yoo, H.W.; Hopkin, R.J.; Lemay, R.; Politei, J.; Wanner, C.; Wilcox, W.R.; Warnock, D.G. Use of a rare disease registry for establishing phenotypic classification of previously unassigned GLA variants: A consensus classification system by a multispecialty Fabry disease genotype–phenotype workgroup. J. Med. Genet. 2020 , 57 , 542–551. [ Google Scholar ] [ CrossRef ]
• Monda, E.; Diana, G.; Graziani, F.; Rubino, M.; Bakalakos, A.; Linhart, A.; Germain, D.P.; Scarpa, M.; Biagini, E.; Pieroni, M.; et al. Impact of GLA Variant Classification on the Estimated Prevalence of Fabry Disease: A Systematic Review and Meta-Analysis of Screening Studies. Circ. Genom. Precis. Med. 2023 , 16 , e004252. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Terryn, W.; Vanholder, R.; Hemelsoet, D.; Leroy, B.P.; Van Biesen, W.; De Schoenmakere, G.; Wuyts, B.; Claes, K.; De Backer, J.; De Paepe, G.; et al. Questioning the Pathogenic Role of the GLA p.A la 143Thr “Mutation” in Fabry Disease: Implications for Screening Studies and ERT. JIMD Rep. 2012 , 8 , 101–108. [ Google Scholar ]
• Smid, B.E.; van der Tol, L.; Biegstraaten, M.; Linthorst, G.E.; Hollak, C.E.M.; Poorthuis, B.J.H.M. Plasma globotriaosylsphingosine in relation to phenotypes of Fabry disease. J. Med. Genet. 2015 , 52 , 262–268. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Kusano, E.; Saito, O.; Akimoto, T.; Asano, Y. Fabry disease: Experience of screening dialysis patients for Fabry disease. Clin. Exp. Nephrol. 2014 , 18 , 269–273. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Lassalle, M.; Monnet, E.; Ayav, C.; Hogan, J.; Moranne, O.; Couchoud, C.; on behalf of the REIN registry. 2017 Annual Report Digest of the Renal Epidemiology Information Network (REIN) registry. Transpl. Int. 2019 , 32 , 892–902. [ Google Scholar ] [ CrossRef ]
• Germain, D.P.; Moiseev, S.; Suarez-Obando, F.; Al Ismaili, F.; Al Khawaja, H.; Altarescu, G.; Barreto, F.C.; Haddoum, F.; Hadipour, F.; Maksimova, I.; et al. The benefits and challenges of family genetic testing in rare genetic diseases-lessons from Fabry disease. Mol. Genet. Genomic Med. 2021 , 9 , e1666. [ Google Scholar ] [ CrossRef ]
• Sodré, L.S.S.; Huaira, R.M.N.H.; Colugnati, F.A.B.; Carminatti, M.; Braga, L.S.S.; Coutinho, M.P.; Fernandes, N.M.D.S. Screening of family members of chronic kidney disease patients with Fabry disease mutations: A very important and underrated task. J. Bras. Nefrol. 2021 , 43 , 28–33. [ Google Scholar ] [ CrossRef ]
• Duro, G.; Anania, M.; Zizzo, C.; Francofonte, D.; Giacalone, I.; d‘Errico, A.; Marsana, E.M.; Colomba, P. Diagnosis of Fabry disease using alpha-galactosidase A activity or lyso-Gb3 in blood fails to identify up to two thirds of female patients. Int. J. Mol. Sci. 2024 , 25 , 5158. [ Google Scholar ] [ CrossRef ]
• Couchoud, C.; Stengel, B.; Landais, P.; Aldigier, J.-C.; de Cornelissen, F.; Dabot, C.; Maheut, H.; Joyeux, V.; Kessler, M.; Labeeuw, M.; et al. The renal epidemiology and information network (REIN): A new registry for end-stage renal disease in France. Nephrol. Dial. Transplant. 2006 , 21 , 411–418. [ Google Scholar ] [ CrossRef ]
• West, M.L.; Geldenhuys, L.; Bichet, D.G. Fabry nephropathy: A treatable cause of chronic kidney disease. Rare Dis. and Orphan Drugs J. 2024 , 3 , 22. [ Google Scholar ] [ CrossRef ]
• Schiffmann, R.; Warnock, D.G.; Banikazemi, M.; Bultas, J.; Linthorst, G.E.; Packman, S.; Sorensen, S.A.; Wilcox, W.R.; Desnick, R.J. Fabry disease: Progression of nephropathy, and prevalence of cardiac and cerebrovascular events before enzyme replacement therapy. Nephrol. Dial. Transplant. 2009 , 24 , 2102–2111. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Chiorean, A.; Lyn, N.; Kabadi, S.; Blanchon, M.; Hayat, P.; Loustalot, P.; Maski, M.; Montmerle, M.; Ponce, E. Cluster analysis of kidney function decline among males with Fabry disease in a large United States electronic health records database. Nephrol. Dial. Transplant. 2023 , 38 , 2350–2357. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Chen, T.K.; Knicely, D.H.; Grams, M.E. Chronic kidney disease diagnosis and management: A review. JAMA 2019 , 322 , 1294–1304. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Najafian, B.; Tøndel, C.; Svarstad, E.; Sokolovkiy, A.; Smith, K.; Mauer, M. One year of enzyme replacement therapy reduces globotriaosylceramide inclusions in podocytes in male adult patients with Fabry disease. PLoS ONE 2016 , 11 , e0152812. [ Google Scholar ] [ CrossRef ]
• Biegstraaten, M.; Arngrímsson, R.; Barbey, F.; Boks, L.; Cecchi, F.; Deegan, P.B.; Feldt-Rasmussen, U.; Geberhiwot, T.; Germain, D.P.; Hendriksz, C.; et al. Recommendations for initiation and cessation of enzyme replacement therapy in patients with Fabry disease: The European Fabry Working Group consensus document. Orphanet J. Rare Dis. 2015 , 10 , 36. [ Google Scholar ] [ CrossRef ]
• Hughes, D.; Linhart, A.; Gurevich, A.; Kalampoki, V.; Jazukeviciene, D.; Feriozzi, S. FOS Study Group. Prompt agalsidase alfa therapy initiation is associated with improved renal and cardiovascular outcomes in a Fabry outcome survey analysis. Drug Des. Devel Ther. 2021 , 15 , 3561–3572. [ Google Scholar ] [ CrossRef ]
• van der Veen, S.J.; Korver, S.; Hirsch, A.; Hollak, C.E.M.; Wijburg, F.A.; Brands, M.M.; Tøndel, C.; van Kuilenburg, A.; Langeveld, M. Early start of enzyme replacement therapy in pediatric male patients with classical Fabry disease is associated with attenuated disease progression. Mol. Genet. Metab. 2022 , 135 , 163–169. [ Google Scholar ] [ CrossRef ]
• Germain, D.P.; Charrow, J.; Desnick, R.J.; Guffon, N.; Kempf, J.; Lachmann, R.H.; Lemay, R.; Linthorst, G.E.; Packman, S.; Scott, C.R.; et al. Ten-year outcome of enzyme replacement therapy with agalsidase beta in patients with Fabry disease. J. Med. Genet. 2015 , 52 , 353–358. [ Google Scholar ] [ CrossRef ]
• Cybulla, M.; Nicholls, K.; Feriozzi, S.; Linhart, A.; Torras, J.; Vujkovac, B.; Botha, J.; Anagnostopoulou, C.; West, M.L. Renoprotective effect of agalsidase alfa: A long-term follow-up of patients with Fabry disease. J. Clin. Med. 2022 , 11 , 4810. [ Google Scholar ] [ CrossRef ]
• Chamoles, N.A.; Blanco, M.; Gaggioli, D. Fabry disease: Enzymatic diagnosis in dried blood spots on filter paper. Clin. Chim. Acta 2001 , 308 , 195–196. [ Google Scholar ] [ CrossRef ]
• Gold, H.; Mirzaian, M.; Dekker, N.; Joao Ferraz, M.; Lugtenburg, J.; Codee, J.D.C.; van der Marel, G.A.; Overkleeft, H.S.; Linthorst, G.E.; Groener, J.E.M.; et al. Quantification of globotriaosylsphingosine in plasma and urine of fabry patients by stable isotope ultraperformance liquid chromatography-tandem mass spectrometry. Clin. Chem. 2013 , 59 , 547–556. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Nowak, A.; Mechtler, T.P.; Desnick, R.J.; Kasper, D.C. Plasma LysoGb3: A useful biomarker for the diagnosis and treatment of Fabry disease heterozygotes. Mol. Genet. Metab. 2017 , 120 , 57–60. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Nowak, A.; Mechtler, T.; Kasper, D.C.; Desnick, R.J. Correlation of Lyso-Gb3 levels in dried blood spots and sera from patients with classic and Later-Onset Fabry disease. Mol. Genet. Metab. 2017 , 121 , 320–324. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Richards, S.; Aziz, N.; Bale, S.; Bick, D.; Das, S.; Gastier-Foster, J.; Grody, W.W.; Hegde, M.; Lyon, E.; Spector, E.; et al. Standards and guidelines for the interpretation of sequence variants: A joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology. Genet. Med. 2015 , 17 , 405–424. [ Google Scholar ] [ CrossRef ]
• Kermond-Marino, A.; Weng, A.; Xi Zhang, S.K.; Tran, Z.; Huang, M.; Savige, J. Population frequency of undiagnosed Fabry disease in the general population. Kidney Int. Rep. 2023 , 8 , 1373–1379. [ Google Scholar ] [ CrossRef ]

Click here to enlarge figure

Share and Cite

Sens, F.; Guittard, L.; Knebelmann, B.; Moranne, O.; Choukroun, G.; de Précigout, V.; Couchoud, C.; Deleruyelle, I.; Lancelot, L.; Tran Thi Phuong, L.; et al. Prevalence of Fabry Disease in Patients on Dialysis in France. Int. J. Mol. Sci. 2024 , 25 , 10104. https://doi.org/10.3390/ijms251810104

Sens F, Guittard L, Knebelmann B, Moranne O, Choukroun G, de Précigout V, Couchoud C, Deleruyelle I, Lancelot L, Tran Thi Phuong L, et al. Prevalence of Fabry Disease in Patients on Dialysis in France. International Journal of Molecular Sciences . 2024; 25(18):10104. https://doi.org/10.3390/ijms251810104

Sens, Florence, Laure Guittard, Bertrand Knebelmann, Olivier Moranne, Gabriel Choukroun, Valérie de Précigout, Cécile Couchoud, Isabelle Deleruyelle, Léa Lancelot, Liên Tran Thi Phuong, and et al. 2024. "Prevalence of Fabry Disease in Patients on Dialysis in France" International Journal of Molecular Sciences 25, no. 18: 10104. https://doi.org/10.3390/ijms251810104

Article Metrics

Further information, mdpi initiatives, follow mdpi.

Subscribe to receive issue release notifications and newsletters from MDPI journals

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

The PMC website is updating on October 15, 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• Kidney Int Suppl (2011)
• v.10(1); 2020 Mar

Global case studies for chronic kidney disease/end-stage kidney disease care

Chih-wei yang.

1 Kidney Research Center, Department of Nephrology, Chang Gung Memorial Hospital, Chang Gung University College of Medicine, Taoyuan, Taiwan

David C.H. Harris

2 Centre for Transplantation and Renal Research, Westmead Institute for Medical Research, University of Sydney, Sydney, New South Wales, Australia

Valerie A. Luyckx

3 Institute of Biomedical Ethics and the History of Medicine, University of Zurich, Zurich, Switzerland

4 Renal Division, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts, USA

Masaomi Nangaku

5 Division of Nephrology, The University of Tokyo School of Medicine, Hongo, Japan

Fan Fan Hou

6 State Key Laboratory of Organ Failure Research, National Clinical Research Center for Kidney Disease, Division of Nephrology, Nanfang Hospital, Southern Medical University, Guangzhou, China

Guillermo Garcia Garcia

7 Servicio de Nefrologia, Hospital Civil de Guadalajara Fray Antonio Alcalde, University of Guadalajara Health Sciences Center, Hospital 278, Guadalajara, Jalisco, Mexico

Hasan Abu-Aisha

8 Almughtaribeen University, Khartoum, Sudan

Abdou Niang

9 Department of Nephrology, Dalal Jamm Hospital, Cheikh Anta Diop University Teaching Hospital, Dakar, Senegal

10 Dialysis Unit, CASMU-IAMPP, Montevideo, Uruguay

Sakarn Bunnag

11 Division of Nephrology, Department of Internal Medicine, Rajavithi Hospital, Bangkok, Thailand

Somchai Eiam-Ong

12 Department of Medicine, Chulalongkorn Hospital, Bangkok, Thailand

Kriang Tungsanga

13 Division of Nephrology, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand

14 Bhumirajanagarindra Kidney Institute, Bangkok, Thailand

Marie Richards

15 SEHA Dialysis Services, Abu Dhabi, United Arab Emirates

Nick Richards

Bak leong goh.

16 Department of Nephrology and Clinical Research Centre, Hospital Serdang, Jalan Puchong, Kajang, Selangor, Malaysia

Gavin Dreyer

17 Department of Nephrology, Barts Health NHS Trust, London, UK

18 Centre for Nephrology, University College London, London, UK

Henry Mzingajira

19 Malawi Ministry of Health, Queen Elizabeth Central Hospital, Blantyre, Malawi

Ahmed Twahir

20 Parklands Kidney Centre, Nairobi, Kenya

21 Department of Medicine, The Aga Khan University Hospital, Nairobi, Kenya

Mignon I. McCulloch

22 Paediatric Intensive and Critical Unit, Red Cross War Memorial Children’s Hospital, University of Cape Town, Cape Town, South Africa

23 Division of Nephrology, College of Medicine, Seoul National University, Seoul, Korea

Charlotte Osafo

24 School of Medicine and Dentistry, College of Health Sciences, University of Ghana, Legon, Accra, Ghana

Hsiang-Hao Hsu

Lianne barnieh.

25 Department of Medicine, University of Calgary, Calgary, Alberta, Canada

26 Pan American Health Organization/World Health Organization’s Coordinating Centre in Prevention and Control of Chronic Kidney Disease, University of Calgary, Calgary, Alberta, Canada

Jo-Ann Donner

27 International Society of Nephrology, Brussels, Belgium

Marcello Tonelli

The prevalence of chronic kidney disease and its risk factors is increasing worldwide, and the rapid rise in global need for end-stage kidney disease care is a major challenge for health systems, particularly in low- and middle-income countries. Countries are responding to the challenge of end-stage kidney disease in different ways, with variable provision of the components of a kidney care strategy, including effective prevention, detection, conservative care, kidney transplantation, and an appropriate mix of dialysis modalities. This collection of case studies is from 15 countries from around the world and offers valuable learning examples from a variety of contexts. The variability in approaches may be explained by country differences in burden of disease, available human or financial resources, income status, and cost structures. In addition, cultural considerations, political context, and competing interests from other stakeholders must be considered. Although the approaches taken have often varied substantially, a common theme is the potential benefits of multistakeholder engagement aimed at improving the availability and scope of integrated kidney care.

The prevalence of chronic kidney disease (CKD) and its risk factors is increasing worldwide, and there is a rapid rise in global need for the treatment of end-stage kidney disease (ESKD). The global nephrology community recognizes the need for a plan to address the growing incidence of CKD and a cohesive approach for CKD/ESKD integrated care. 1 This provides a major challenge for health systems, particularly in lower-middle-income countries (LMICs). Because of the growing demand for expensive kidney replacement therapy (KRT; dialysis or kidney transplantation) and in light of the limited resources, ESKD care must be prioritized against the prevention and treatment of CKD, acute kidney injury (AKI), and other noncommunicable diseases (NCDs).

Countries are responding to the challenge of ESKD in different ways, with variable provision of the components of a kidney care strategy (effective prevention, detection, conservative care, kidney transplantation, and an appropriate mix of dialysis modalities) and World Bank classification of economic status. 2 A key goal stated in the article by Harris et al. 1 was to identify a representative selection of country-based case studies showing different levels of development in managing CKD/ESKD care, which offers valuable learning examples. This article illustrates the different approaches that 15 countries have taken toward integrated kidney care ( Table 1 ). Specific areas of approach, in distinct contexts, provide unique experience in CKD, dialysis, and transplantation for ESKD care that are appropriate for each country. Variability in approaches may be explained by country differences in burden of disease, available human or financial resources, and cost structures. In addition, cultural considerations, political context, and competing interests from other stakeholders are confounding factors. This created value to appreciate the similarities and differences of approaches among the unique pathways obtained from each country’s cases.

Table 1

Summary of the CKD/ESKD care study cases

CKD, chronic kidney disease; ESKD, end-stage kidney disease; KRT, kidney replacement therapy; PD, peritoneal dialysis.

Finally, the current approach to kidney disease in many countries is neither sufficient nor sustainable. Thus, this series of case studies demands the urgent attention of governments and policymakers in each country to achieve better integrated CKD/ESKD care.

Integrated CKD/ESKD Care Cases

Taiwan (high-income country): evolution of comprehensive integrated ckd/eskd care.

High prevalent rates of CKD have continued in Taiwan and are reported to be 6.9% for CKD stage 3 to 5, 9.83% for clinically recognized CKD, and 11.9% for CKD stage 1 to 5. However, overall awareness of CKD is low. 3 The major underlying kidney diseases contributing to ESKD are diabetes mellitus (43.2%), chronic glomerulonephritis (25.1%), hypertension (8.3%), and chronic interstitial nephritis (2.8%). 4 The national kidney care program was initiated in response to high rates and has been successfully implemented across Taiwan, resulting in improvements in outcomes for patients along with sustainable cost reductions for the health care system. The pathway and evolution of the CKD/ESKD program in Taiwan may serve as a template in countries where CKD/ESKD is an emerging health care burden ( Table 2 and Appendix 1 ).

Table 2

Evolutionary pathway and road map of CKD/ESKD integrated care in Taiwan

CKD, chronic kidney disease; ESKD, end-stage kidney disease.

To monitor the incidence and burden of ESKD, a national dialysis registry was initiated in 1987 by the Taiwan Society of Nephrology. After this, the Taiwan Society of Nephrology proposed to the Department of Health to make CKD prevention and care a major public health priority. Subsequently, an integrated CKD care program was initiated to promote the screening of high-risk populations (according to the risk factor analysis of epidemiology studies), patient education, and multidisciplinary team care. The CKD care program started in major hospitals in the first phase, then extended to 90 institutes in 2009, and finally rolled out to clinics of general practitioners in 2011. To encourage enrollment in the CKD care program, the Bureau of National Health Insurance reimbursed comprehensive pre-ESKD care for patients with CKD stage 3b to 5 since 2007 and has extended coverage to CKD stage 1 to 3a (early CKD) in 2011. 5 , 6 , 7

These efforts to combat CKD in Taiwan involve collaboration among government, academia and their respective societies, and nongovernmental organizations (NGOs) to enable a multidisciplinary approach that targets not just CKD but also upstream drivers such as diabetes, hypertension, and hyperlipidemia.

Since November 2003, widely used nephrotoxic Chinese herbs containing aristolochic acid were prohibited through public health legislation. This important step also contributed to CKD/ESKD prevention in Taiwan.

Dedicated nephrologists are key to the success of the program, as this group is crucial for performing roles ranging from CKD screening, education, and treatment to involvement and negotiation of public health policy. The CKD committee within the Taiwan Society of Nephrology was the core for the promotion of CKD prevention activities in collaboration with the government—including the Taiwan Kidney Day campaign, which started in 2005.

Strategies for CKD/ESKD care

The strategy and road map for CKD/ESKD care in Taiwan include the following:

• • extending the target population from severe CKD to early stages of CKD as well as commencing kidney health promotion in the general population;
• • integration of CKD as a target of pay-for-performance health care improvement projects, along with diabetes and cardiovascular disease;
• • implementation of early detection and surveillance via national annual physical checkup data for early CKD;
• • early referral to proper care clinics/hospitals;
• • promoting health literacy to the general public; and
• • increased attention to those at highest risk: elderly, multiple diseases, polypharmacy, and so on.

Other factors that have affected the incidence and prevalence of ESKD in Taiwan include universal health coverage (UHC) along with collaboration among government, academia, and NGOs with nephrology societies. Further efforts will be on the prevention and reduction of AKI, outcome monitoring, the promotion of CKD/ESKD shared decision-making, and kidney conservative care. Finally, sustainable quality care of patients with ESKD receiving KRT should be maintained as the ultimate goal.

Outcome measures include the stabilization of the incidence of ESKD in those younger than 75 years, along with lower mortality, better quality of care, less medical costs, better quality of life, and slower rate of progression in patients as demonstrated by findings from the pre-ESKD and early CKD integrated care program 5 , 6 , 7 and diabetes care program. 8 Recent progress of ESKD care has evolved to include more shared decision-making within advance care planning to enable patients and families to choose from various supportive or conservative care options (KRT and withholding/withdrawal of dialysis, where appropriate). The era of CKD care has in parallel progressed to include multidisciplinary care alongside cardiac-kidney-diabetes care with involvement from cardiologists, nephrologists, and endocrinologists. Together these specialists evaluate and educate through dietary management, medical treatment, and surgical intervention, with the goal of reducing mortality and complications in patients with CKD/ESKD. A new concept of personalized care for patients with multimorbidities on dialysis was initiated to treat patients with evidence-based medicine according to the recommended guidelines while also adjusting and modifying for more personalized therapy. This approach has resulted in the stabilization of diabetes mellitus as a cause of ESKD in Taiwan and has also reduced the use of analgesics in patients with ESKD in the year before the initiation of dialysis. 9 The involvement of vascular surgeons in the care of patients on dialysis has also resulted in a reduction of vascular access reconstruction rates. The overall 5-year survival rate of patients on dialysis is currently ∼55.2%, which lies between the rates observed in Japan and Europe. Although the rate of transplantation has been low in Taiwan, the recent promotion of living-related kidney transplantation has increased.

Japan (high-income country): a mature integrated CKD/ESKD care system

Strategies and action plans for kidney disease have been discussed and implemented in collaboration with national and local governments, academic societies, nonprofit organizations, and patient groups in Japan.

Strategies for kidney disease in Japan have focused on early diagnosis of kidney disease by health checkups conducted in schools or workplaces, improvement in CKD care, and dialysis therapy. Dialysis therapy has been covered by health insurance since 1967, and patients requiring maintenance dialysis treatment have been exempted from medical expenses since 1972. Kidney transplantation has been covered by health insurance since 1978, and the Organ Transplant Law of Japan was legislated in 1997. The Ministry of Health, Labour and Welfare promotes various areas of research, such as the kidney failure research team (founded in 1989) and the medical care of chronic kidney failure (published guidelines for dialysis initiation in 1991).

Following the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (KDOQI) Clinical Practice Guidelines for Chronic Kidney Disease: Evaluation, Classification, and Stratification of Risk, a CKD initiative subcommittee was launched in the Japanese Society of Nephrology (JSN) in 2004. 10 To raise awareness of CKD and its complications to society and promote its measures on a national scale, the Japan Association of Chronic Kidney Disease Initiative was founded by JSN in association with the Japanese Society for Dialysis Therapy and the Japanese Society for Pediatric Nephrology in 2006. Since 2007, Kidney Disease Measures Study Meetings, with participation from physicians, nurses, public health specialists, local government staff, and representatives of kidney disease patient groups, were held by the Ministry of Health, Labour and Welfare. These meetings resulted in the formation of the national action plan of CKD strategies in 2008: Future Kidney Disease Measures to Be Achieved. The aim of the strategies is to slow progression of kidney dysfunction, prevent the need for KRT, decrease the number of patients with incipient kidney failure, and reduce cardiovascular complications from CKD. Specifically, this action plan called for raising awareness and disseminating knowledge, a medical cooperation system, improvement in medical treatment standards, development of human resources, and promotion of research. The Ministry of Health, Labour and Welfare is currently revising the national action plan for CKD through the second Kidney Disease Measures Study Meeting, discussing a new national action plan to reduce the number of patients on incident dialysis below 35,000 per year by 2028.

Japanese scientific societies, including JSN, Japanese Society for Dialysis Therapy, and Japan Medical Association, developed various guidelines for referral and care of patients with kidney disease between general practitioners and nephrologists.

In 2013, the Ministry of Health, Labour and Welfare developed a formal document targeting CKD within the national health promotion agenda (Basic Direction for Comprehensive Implementation of National Health Promotion). This document included numerical targets to reduce the number of patients on incident dialysis due to diabetic kidney disease by 2022.

Since Japan instituted UHC in 1961, all citizens are covered by some kind of health insurance. The Japan Revitalization Strategy 2013, a growth strategy announced by the Japanese government extending the nation’s “healthy life expectancy,” was set as one of the themes. 11 Programs to develop a new system of preventive care and health management will be promoted through the requirement of all health insurance societies to analyze data such as health insurance claims. This project program called Data Health Plan will use health data to maintain and improve health conditions of its subscribers, including reduction in the incidence of dialysis. Concrete plans are needed to prevent the onset and worsening of CKD from lifestyle-related disease, such as diabetes or hypertension, identified in specific medical checkups ( Figure 1 ) 12 instituted in 2008. These specific medical checkups are mandated by individual health insurance companies according to the guidelines that outline appropriate laboratory tests to be included, standard inquiries, and the selection and stratification of individuals who require further health guidance. JSN is continuing to emphasize collaboration with other domestic and international societies and regulatory agencies. JSN also achieved its goal of collaborating with the International Society of Nephrology (ISN) and the Japanese Diabetes Society. 13

Relationship between the basic concept of Data Health Plan and chronic kidney disease (CKD), Japan. Reproduced with permission from [Proposal to achieve a decline in the number of dialysis initiations due to lifestyle related diseases—early detection and prevention of onset and progression of CKD]. Nihon Jinzo Gakkai Shi. 2016;58:429–475 [in Japanese]. 12 Copyright © 2016 Japanese Society of Nephrology.

The number of kidney transplantation procedures has increased from 749 in 2000 to 1598 in 2011 and remains constant in 2016 with 1648 total transplants (of note, 1471 from living donors, 61 from donors after cardiac death, and 16 from donors after neurological death). As a proportion of the general population, these rates are low compared to other high-income countries. Standardized incidence ratios of dialysis have significantly decreased since 2008 in Japan ( Figure 2 ). 14 However, the total number of patients on incident dialysis was projected to increase from 36,797 in 2015 to 40,360 in 2025 because of the aging population.

Incidence rates of dialysis by sex and age group in Japan, 2005–2015. Reproduced with permission from Wakasugi M, Narita I. Evaluating the impact of CKD initiatives on the incidence of dialysis in Japan. Jpn J Nephrol. 2018;60:41–49. 14 Copyright © 2018 Japanese Society of Nephrology and the Japanese Journal of Nephrology.

China (upper-middle-income country): prevention and treatment of ESKD

China is the largest LMIC and is home to 20% of the world’s population. CKD is common in China and is now the fastest growing cause of death. 15 The government’s current NCD policy, along with major national medical research grants, focuses predominantly on 5 diseases—cardiovascular disease, cancer, diabetes, chronic respiratory disease, and mental illness—notably excluding CKD. There is no national program for the prevention and treatment of CKD or chronic dialysis in China, though Chinese nephrologists have made great efforts to reduce the prevalence of ESKD and improve outcomes in this population, particularly during the last decade.

Understanding CKD and ESKD burden

CKD is a rapidly growing health burden and is a huge health care challenge in China. Epidemiological studies show that the prevalence of CKD in Chinese adults is 10.8%, 15 representing a population of 120 million patients. As of 2017, there were ∼1 million patients with ESKD in China, with only 52% of them having access to KRT. 16 Based on the current average treatment cost, the annual health care expenditure on dialysis in China is ∼US$50 billion.

A recent study, the China Renal Biopsy Series, analyzed 71,151 patients who had a kidney biopsy at 1 of 938 hospitals in 282 cities across China from 2004 to 2014. 17 This analysis found that IgA nephropathy was the most common glomerular disease with a standardized frequency of 28% and the leading cause of progressive CKD in all age groups. Furthermore, the risk of membranous nephropathy has increased by 13% annually during the last decade. The latter could be associated with the increased level of air pollution with particulate matter <2.5 μm in diameter, a health problem faced by many developing countries.

With the rapid growth of the economy and changes in lifestyle, the prevalence of diabetes mellitus is significantly increasing in China. 18 This increase has changed the pattern of CKD in China. Since 2011, the percentage of CKD due to diabetes has exceeded that of glomerulonephritis-induced CKD in hospitalized patients. 19

AKI is an important driver of CKD, and in China, the incidence of AKI is 11.6% in hospitalized adults 20 and 19.6% in children, 21 but the detection rate is only 0.99% in hospitalized patients. 22 In addition to other known risk factors, nephrotoxic herbs are a potential risk factor for AKI in Chinese adults.

Developing population-based prevention approaches for CKD/ESKD according to the risk factor in the Chinese population

Epidemiological studies have shown that folic acid deficiency is prevalent in Chinese hypertensive populations, particularly in rural areas, and is associated with the risk of development of CKD. 23 A recent large-scale, multicenter, randomized controlled trial conducted in 20 rural communities in China evaluated the efficacy of folic acid supplementation in the prevention of kidney function loss in a hypertensive population without previous cardiovascular disease. 24 Compared to treatment with enalapril alone, the addition of low-dose folic acid significantly reduced the risk of kidney function decline. In patients with CKD at study enrollment, folate supplementation reduced the risk of CKD progression by 56%. Folic acid therapy was also found to reduce the risk of a first stroke 25 and new-onset albuminuria in patients with diabetes. 26 Because folate deficiency has been reported in other developing countries, 27 supplementation of folic acid would be considered a kidney-protective approach for hypertensive populations in these regions.

Developing intervention approaches for delaying progression of CKD in China

Once CKD progresses to ESKD, the risk of death and medical costs increase exponentially. Delaying progression of CKD toward ESKD is an important strategy for reducing the burden of ESKD, particularly in LMIC with limited medical resources. The efficacy of renoprotection by angiotensin-converting enzyme inhibitors and angiotensin receptor blockers in patients with CKD has been demonstrated in randomized controlled trials. 28 , 29 Angiotensin-converting enzyme inhibitors can even be administered in patients with CKD stage 4 and delays the onset of ESKD from 3.5 to 7 years. 30 Uptitration of angiotensin-converting enzyme inhibitor or angiotensin receptor blocker dosages against albuminuria confers further benefit on kidney outcomes in patients with nondiabetic CKD and kidney insufficiency. 31 Given the ∼80,000 patients initiating dialysis every year in China, the uptake of these therapies could save US$120 million annually by delaying dialysis by 1 year for each patient.

Promoting home-based KRT in China

The number of patients on peritoneal dialysis (PD) in China rose from 37,942 in 2012 to 55,373 in 2014. 32 China also has the largest variation in PD uptake among regions, ranging from 14% in mainland China to 73% in Hong Kong. 33 The PD-First policy implemented by Hong Kong health authority may contribute to the higher rate of PD uptake. PD has been recommended as a preferred KRT because of its lower cost, reduced requirement for technical support, and less need for trained medical staff. Increasing access to PD could help increase access to KRT for patients with ESKD, particularly in LMIC.

There are still challenges in delivering PD to patients with ESKD living in rural areas with less access to medical care and dialysis. The Flying Angel program is a model developed by a partnership between the Chinese government, medical centers, and the PD industry to overcome the barriers of promoting PD in rural China. 34 This program develops collaboration between central hospitals and community clinics, provides PD training for community medical practitioners, and has a delivery system for PD fluid and materials. This program has increased access to KRT for rural patients with ESKD. 34

The optimal management of home-based PD is critical for reducing the risk of failure and improving outcomes. By implementing a telephone hotline and mobile phone applications, the collaboration between central hospitals and community clinics is strengthened further, facilitating communication between physicians and patients on PD. Home-based management systems, which include mobile phone applications, also provide lifestyle modification guidance for patients and collects information on treatment response from patients. This model of care increases the compliance of patients on PD and decreases the cost associated with hospital and physician visits.

Mexico (upper-middle-income country): moving toward universal access of CKD/ESKD care

Mexico’s health system does not offer UHC for patients with kidney disease. Social security benefits, including universal access to dialysis and kidney transplantation, are available to individuals employed by the private sector or by the government. However, more than half of the population does not have access to social security benefits and cannot afford private health care services. Access to dialysis and kidney transplantation for this population is limited or nonexistent. 35

To reduce health disparities, a constitutional reform was introduced in 1983, recognizing the right of Mexicans to access health insurance. 36 In 1984, legislation on organ and tissue donation and transplantation was passed by the Mexican congress, including the setup of the National Transplantation Registry, to coordinate and facilitate organ procurement and transplantation. In the 1990s, a network of state transplant coordinators and associated organizations were organized throughout the country, as well as a central coordinating center, the National Transplant Center (CENATRA in Spanish). 37

In 2000, a workshop was convened by the Ministry of Health (MOH) to organize a national dialysis registry, with the participation of representatives of all 32 Mexican state health secretariats; members of the Mexican Society of Nephrology, the Mexican Institute for Nephrology Research, the Mexican Board of Nephrology, and Jalisco Dialysis and Transplant Registry; the directors of the Canadian Organ Replacement Registry and the United States Renal Data System. After this, an ad hoc steering committee began a series of meetings at the MOH’s National Directorate of Epidemiology to set up the registry 38 and a number of actions for the prevention and control of CKD were included in Mexico’s National Health Plan 2001–2006. 39 Among them was the implementation of early screening and treatment of CKD along with a national dialysis registry.

In 2003, a structural reform of the Mexican health system increased financial protection of its citizens by offering publicly subsidized health insurance to more than half of the population not covered by social security. The center of the reform was the creation of Seguro Popular (Popular Health Insurance), 40 which divides personal health services into essential packages of interventions financed by the Fund for Protection against Catastrophic Health Expenditures (FPGC). 41 The law came into effect on January 1, 2004, and dialysis and organ transplantation were among the 7 high-cost interventions included in the FPGC. In 2010, the MOH set up the Strategic Health Services Network Against Chronic Kidney Disease, emphasizing the need for early detection and treatment of CKD. 42

In 2015, the Mexican Health Foundation (FUNSALUD in Spanish) began organizing a series of meetings with representatives from Mexico’s health systems and members of the Mexican nephrology societies to reinitiate the setup of the dialysis registry, which had been abandoned by Mexican health authorities. After the ISN Global Kidney Policy Forum held at the ISN World Congress of Nephrology 2017 in Mexico City, the MOH implemented the pilot testing of the National Registry of Chronic Kidney Disease (RENERC in Spanish) as part of the nation’s health information system.

Thirty-five years after the constitutional reform of 1983, universal access to kidney care is yet to be realized. Since the implementation of Seguro Popular, the proportion of the population with some type of public health insurance has increased from 41% in 2002 to 81% in 2015 43 and the number of high-cost interventions included in the FPGC has increased from 7 to 68. However, Seguro Popular still does not pay for dialysis. As a result, the marked disparities between the insured and uninsured populations with access to KRT persist. By 2015, the incidence and prevalence of patients receiving treatment for ESKD with social security were 281 and 1357 per million population (pmp), respectively; however, 130 patients pmp on incident dialysis and 200 patients pmp on prevalent dialysis remained uninsured. 35

The introduction of legislation on organ donation and transplantation in 1984 resulted in a significant increase in kidney transplantation rates, from 1.57 pmp in 1984 to 22.8 pmp in 2015. However, this success is not observed in the population without social security. Because Seguro Popular still does not cover the cost of kidney transplantation and immunosuppressive drugs, transplantation rates remain significantly lower in patients without social security. 35

Eight years after the setup of the Strategic Health Services Network Against Chronic Kidney Disease, strategies to prevent CKD are yet to become part of the nation’s NCD health policies. CKD screening is low or nonexistent across Mexico. Furthermore, uninsured patients with predialysis CKD are often denied access to treatment by Seguro Popular once identified as having kidney disease. 35 Therefore, the opportunity to intervene to delay the progression of CKD is lost.

Finally, the dialysis registry is currently under pilot testing with the participation of several dialysis centers. The sustainability and nationwide expansion of the registry are yet to be seen.

Sudan (lower-middle-income country): evolution of strategies for CKD/ESKD care

During the 1970s, a Sudanese patient was treated in London, UK, for kidney failure by hemodialysis (HD). As he decided to continue his treatment under the care of medical staff of the University Hospital of Khartoum, his HD machine was the basis for the first dialysis unit in Khartoum.

Around the same time, a young surgeon by the name of Omar Beliel was sent by the University Hospital of Khartoum to train in England to be a neurosurgeon. While in the United Kingdom, he had kidney failure and eventually he received a kidney donated by his brother. Dr. Beliel later wrote an autobiography titled Two Lives: Death Odyssey of a Transplant Surgeon , 44 in which he describes how kidney transplantation gave him a “second life.” He subsequently shifted his training from neurosurgery to transplant surgery and performed the first kidney transplantation procedure in Africa from a living-related donor in 1974. By the mid-1970s, HD, intermittent PD through the use of hard catheters, and living-related kidney transplantation were established services at the University Hospital of Khartoum. However, these services were limited because of resources and the University Hospital remained mostly an academic and teaching facility.

The 1980s saw an expansion in dialysis services to benefit more patients, which was supported by the Ministry of Finance. It was soon evident that these services were costly and further expansion was unlikely to be feasible.

In 1994, the government called for Expert Opinion Conferences on How-Best-to-Do (HBTD) the civil services. The conferences called on scholars and experts in health, education, economy, and other areas to discuss reform of these issues and make recommendations to be executed by the government. A final recommendation in the area of health was to establish the National Centers of Health Care for 5 key areas: kidney disease, heart disease, oncology, gastroenterology and hepatology, and neurosciences. These national centers were required to plan for health care in their respective areas, along with suggestions and the means for successfully operating across the country. Thus, the National Center for Kidney Diseases and Surgery was established in 1995 and has been responsible for CKD/ESKD care across Sudan for the last 2 decades.

The National Medical Supplies Fund was established hand in hand with the National Centers of Health Care. The main objective was to procure and justly distribute medicines nationwide at the lowest cost. An important issue that resulted from the National Medical Supplies Fund policies was the need to have a national regulation for life-saving medicines (LSM), medicines that should be available to all citizens free of charge. After many discussions, it was agreed that the treatment of ESKD was to be considered a lifesaving issue and therefore both dialysis and kidney transplantation would be covered by the LSM bill. Thanks to this huge step forward, the development of both CKD services as preventive measures and ESKD therapy would be managed under the umbrella of the National Center for Kidney Diseases and Surgery.

Another important contribution to the success of managing CKD/ESKD in Sudan is the National Zakat Fund (NZF), which was established in the 1990s. Zakat is an Islamic concept where Muslims with the financial means are required to contribute 2.5% of their annual income as charity. The current government decided, for the first time, to create an organized institution to then use these funds in an orderly fashion. As the activities of the fund are regularly published, it became a trustworthy organization and most individuals who pay zakat prefer NZF to find suitable recipients of the aid. Religious scholars agreed that treatment of ESKD through dialysis and transplantation would be eligible to be supported by NZF.

In 2005, the National Medical Supplies Fund accepted continuous ambulatory PD as a viable option for treatment of ESKD, particularly for children and young patients. It has since become an option for ESKD management, albeit on a limited scale.

Using funds obtained from the LSM bill and NZF, the National Center for Kidney Diseases and Surgery is able to meet the requirements of providing CKD/ESKD care for citizens in Sudan.

Dialysis facilities and modalities

Sudan is the second largest country in Africa, with a total population of ∼38 million. Nearly all cities and large towns have governmental HD centers to care for patients with ESKD. Currently, the total number of HD centers is 72. There are 7200 patients currently on dialysis; 97% of these are on HD. 45 HD is based on twice weekly sessions for stable patients. The reason for this suboptimal dialysis schedule is to accommodate as many patients with EKSD as possible under the free-of-charge scheme of the national HD system. A recent survey showed that the 1-year survival of patients on twice weekly HD was 83%. 46 Patients who had functioning arteriovenous fistulas did significantly better than those who were dialyzed via cuffed or noncuffed central venous catheters. 46 Availability of continuous ambulatory PD is still limited to the greater Khartoum state. Although only 3% of patients on dialysis are on continuous ambulatory PD, the outcome and quality of life figures are rewarding. If PD fluid could be manufactured locally, ideally more patients on PD could be accommodated.

Kidney transplantation

The kidney transplant activities in Sudan over the last 5 years are increasing. Kidneys are transplanted exclusively from living-related donors. About 80% of the cost of the transplant is covered by either the LSM bill or NZF. All patients (irrespective of where the transplant was done) receive immunosuppressive drugs free of charge.

In summary, the most important milestones in developing a strategy for care for patients with CKD/ESKD in Sudan are as follows:

• • The call by the government in 1994 for national conferences to give advice on how best to do reforms across the country. This resulted in the birth of the National Center for Kidney Diseases and Surgery, which plans and supervises kidney care nationwide.
• • The introduction of the LSM bill was a novel resolution that made it possible to view CKD/ESKD care as a lifesaving issue, using funds to cover almost all citizens free of charge.
• • The Islamic system of zakat that requires eligible Muslims to voluntarily pay 2.5% of their annual income to support the poor or programs designed to help the poor. The addition of CKD/ESKD care to be covered by this fund has helped immensely.

Senegal (lower-middle-income country): fundamental development of CKD/ESKD care

Senegal is a country on the western tip of Africa, with a population of 15 million, and is one of the poorest countries in the world. Nephrology was unknown in Senegal until the return of the first Senegalese nephrologist after the conclusion of his training in France. Over time, a dedicated nephrology curriculum for undergraduate medical students along with HD and kidney biopsy practices has been introduced. Until 2010, however, there were only 2 HD centers in each of the public and private health sectors, dialysis costs were paid out of pocket by patients without health coverage, and there were only 3 nephrologists in the country.

Epidemiology

The prevalence of CKD in Senegal is estimated at 4.9%. 47 The main cause of CKD is hypertension, followed by chronic glomerulonephritis (especially primary focal segmental glomerulosclerosis), diabetes, and the use of traditional nephrotoxic drugs. The World Health Organization STEPwise survey found the prevalence of hypertension and diabetes in the general Senegalese adult population aged 45 to 49 years to be 25% and 5.4%, respectively. Advocacy and increased awareness among political authorities has made it possible to set up an NCD office at the MOH with a focal point on nephrology for the management of kidney disease. UHC was introduced in 2014, which provides free dialysis for Senegalese patients, but with limited availability. The government provides all dialysis supplies and a bundled payment of 10.000 FRFA (US$20) for each dialysis session at public dialysis centers. Patients, when dialysis slots are not available, are registered on the first come, first serve waiting list. In the meantime, to survive, patients must pay out of pocket to receive dialysis in the private sector.

Kidney care

A national and international nephrology referral service has been developed at the largest university hospital in Senegal. An average of 200 kidney biopsies are done each year, with samples processed and read on site. HD began at the largest public HD center with 25 stations, and HD services grew from 2 HD centers in 2010 to 20 centers all across Senegal. In 2004, the first PD center was established for the management of acute and chronic kidney failure in children and adults using continuous ambulatory PD and automated PD. 48 The costs of dialysis were first fully and then partially borne by the patient until 2012. Since 2012, dialysis costs, with the exception of epoetins and laboratory tests, are fully covered by the government in the public sector and partly covered in the private sector. In the public sector, dialysis supplies are obtained through the National Pharmacy Supply, through 2-year international tenders, permitting regular renegotiations. Kidney transplantation has not yet been done in Senegal. However, a working group with the support of experts drafted texts and laws governing organ transplantation, which passed a National Assembly vote on November 27, 2015. A presidential decree establishing the National Council for Organ Transplantation is on standby.

Training and education in nephrology

A nephrology school was opened in 2005 in Dakar to fill the gap of nephrologists in the sub-Saharan Africa region as no single country had more than 5 nephrologists, half the countries had no nephrologists, and Senegal had only 3 nephrologists. Between 2005 and 2017, by combining internal medicine and nephrology, the school trained 104 nephrologists from 21 African countries in a 4-year curriculum (including 2 semesters in France). A 2-year curriculum for nephrology nurses was introduced in 2008 and has trained 90 senior nephrology nurses from 7 African countries. In collaboration with the ISN, 3 training workshops on AKI, CKD, and PD have been organized with >400 participants per workshop to meet continuing medical education goals. 49

A working group with diverse experts (doctors, biologists, surgeons, pharmacists, and administrative staff) has been set up by the MOH to achieve an integrated CDK/ESKD care strategic plan. This strategy will enhance awareness and prevention, propose ways to reduce the growing number of patients on dialysis waiting lists, and extend PD to rural areas as it costs less than HD and will allow more patients with ESKD to be treated with dialysis. The annual cost per patient is US$13,650 for PD compared with US$18,000 for HD. 50 Training standards for health care workers must be developed in conjunction with nephrologists. The National Council for Organ Transplantation will be established, and the support of foreign partners will be needed for the accreditation of the initiation of living-related kidney transplantation.

An integrated CDK/ESKD care strategic plan was developed in 2019. The number of patients with CKD on dialysis has grown from 50 in 2010 to >800 currently; this number was doubled in 2019 with the opening of 10 new HD centers across the country. Two new PD centers were opened in 2019. This expanded the treatment of 60 patients with CKD and 20 patients with AKI at the current single center to the treatment of >150 patients with CKD and 50 patients with AKI. From 3 nephrologists in 2008, the country currently has 27 nephrologists and 128 nurses with specialization in nephrology; the goal is to train 5 additional nephrologists and 10 additional specialized nurses per year. The establishment of the National Council for Organ Transplantation will set the rules and criteria for accreditation, enabling the first successful kidney transplantation in Senegal in 2019.

CKD Strategy Cases

Uruguay (high-income country): prevention and treatment of ckd.

Uruguay, a developing country in South America with 3.44 million inhabitants, was classified as a non–Organisation for Economic Co-operation and Development high-income country by the World Bank in the last decade. In recent years, there has been a sustained growth in the aging of the population, and life expectancy at birth has increased to 77 years (73 years for men and 81 years for women). A National Integrated Health System (SNIS in Spanish) was launched in 2008 to provide UHC to the entire population. The total expenditure on health per capita in 2016 was ∼US$1800, which represents 8.6% of the nation’s gross domestic product. 51

The SNIS is funded by contributions from employers, employees, retirees, and tax revenues that go to the National Health Fund (FONASA in Spanish) and the National Fund of Resources (FNR in Spanish) ( Figure 3 ). 52 The FNR is a public nongovernmental agency, created by law in 1980 with the purpose of providing funds for highly specialized medical procedures, such as dialysis and transplantation, on the basis of approved protocols. This fund accounts for ∼10% of all public expenditures on health; expenses related to dialysis account for ∼27% of the entire fund.

National Integrated Health System (SNIS in Spanish) financial sources in Uruguay. Reproduced with permission from Ministerio de Salud Pública. La Construcción del Sistema Nacional Integrado de Salud. 2005–2009. Available at: http://www.paho.org/hq/dmdocuments/2010/construccion_sist_nac_integrado_salud_2005-2009-uruguay.pdf . Accessed March 18, 2018. 52

Action and strategies for CKD/ESKD care

UHC of patients receiving KRT has been available since 1981, with the financial support of the FNR. Data on these patients are collected by the Uruguayan Dialysis Registry.

In April 2004, representatives from the Uruguayan and Latin-American societies of nephrology, the Uruguayan Department of Health, and the FNR signed the Declaration of Montevideo with the aim of enhancing CKD care and recommended an Advisory Committee on Renal Healthcare to develop a National Renal Healthcare Program. Six months later, a pilot program was launched that included (i) education programs on kidney health care, including information on a healthy lifestyle, in the general population, with the aim to reduce cardiovascular and kidney risk factors; (ii) increased accessibility to kidney health care at the primary care level; (iii) promotion of early diagnosis of CKD in the population at risk; (iv) enhanced care given to patients at all stages of CKD; and (v) prevention of cardiovascular morbidity and mortality, as they are high in the target population. 53 , 54

The methodology for developing and spreading the National Renal Healthcare Program included several advances: (i) the development of clinical guidelines for identification, 55 evaluation, and management of patients with CKD at the primary care level; (ii) the creation of kidney care teams (including a nephrologist, a dietitian, and a nurse) to work in primary care centers to treat patients referred to them by primary care practitioners; (iii) the management of patients with CKD stage 1 to 3 directly by the laboratory; and (iv) patients with CKD stage 4 and 5 were referred to a CKD advanced clinic, staffed by a formal multidisciplinary team including nephrologists, dietitians, nurses, psychiatrists, vascular surgeons, and social workers.

An online CKD registry housed at the FNR records data on patients with estimated glomerular filtration rate (eGFR) < 60 ml/min per 1.73 m 2 and persistent albuminuria >300 mg/d (or >30 mg/d in patients with diabetes) and features a centralized alarm system to minimize failure to follow-up. 56 Although the National Renal Healthcare Program is not mandatory for every health care provider, the feasibility of this is being studied. 57

Since 2009, testing for CKD in high-risk populations (case finding) has been incorporated into the mandatory health checkups of the working population via a decree of the Department of Health. Evaluation includes urine examination and serum creatinine tests in diabetic and hypertensive individuals. 58

Not all Latin American countries provide the same level of CKD care, which is why the Latin-American Society of Nephrology and Hypertension (SLANH in Spanish) and the Pan American Health Organization declared that all countries should improve CKD care and increase coverage of dialysis treatment. Together, through Pan American Health Organization’s virtual space, they launched an online course (in Spanish and Portuguese) on CKD prevention and care in July 2016, aimed at primary care practitioners throughout Latin America. 59

Uruguayan Dialysis Registry

Data from the Uruguayan Dialysis Registry found that diabetic and hypertensive diseases are the most common causes of ESKD. 60 The prevalence of ESKD was 756 patients pmp, with 90% on HD and 10% on PD in December 2014; the prevalence of ESKD is 1031 pmp when patients with a functioning kidney allograft are included.

CKD registry

The target population and the variables included in the registry have already been described elsewhere. 61 Between October 1 and December 31, 2017, 20,879 patients were recorded; the mean age was 66 years, and 47.6% were female. The most frequent causes of CKD were vascular nephropathy (40.8%), diabetic nephropathy (19.1%), obstructive nephropathy (7.9%), and primary glomerulonephritis (4.8%). The most frequent risk factors for kidney disease were hypertension (86.9%), dyslipidemia (54.2%), diabetes (37.3%), and obesity (37.7%). Most patients were referred to a nephrologist at later stages (CKD stage 3 or greater). 62

Every year, the Advisory Committee on Renal Healthcare carries out an evaluation that assesses the quality of care at the primary level, the achievement of therapeutic goals under nephrology care, the rate of progression of CKD, and the mortality due to ESKD. There has been a sustained increase in blood pressure control care since 2005, with the proportion of patients with systolic blood pressure <140 mm Hg and diastolic blood pressure <90 mm Hg rising from 36.5% to 63.9% and from 58.5% to 86.5%, respectively. 63

Table 3 highlights some indicators of kidney care in Uruguay. 64 More than 50% of patients are stabilized with an eGFR loss of <1 ml/min per 1.73 m 2 per year, and 79% of patients with diabetes and albuminuria are taking renin-angiotensin system blockade (despite heterogeneity between groups, ranging from 54% to 96%). The risk of new cardiovascular events was related to previous cardiovascular disease, diabetes, male sex, and increased age and albuminuria and had a U-shaped curve for systolic blood pressure. 65 Other than well-known risk factors such as albuminuria and blood pressure, acidosis was related to greater increase in creatinine. 66 Finally, there is evidence that predialysis CKD care may improve outcomes once patients are established on dialysis in Uruguay. 67

Table 3

Achievement of quality of care indicators under nephrology care in Uruguay (National Renal Healthcare Program 2004–2016)

eGFR, estimated glomerular filtration rate; LDL, low-density lipoprotein; RAS, renin-angiotensin system.

Since 1981 in Uruguay, there is UHC for dialysis. A CKD screening and prevention program was launched in 2004. Today, these are being incorporated into mandatory health programs, with the aim of making them universal throughout the country. There has been improvement in the quality of care as well as a reduction in CKD progression; the potential benefits of predialysis CKD care seem to extend even to patients who eventually have kidney failure. CKD care requires the commitment of the nephrology community and the national authorities. The former provides guidelines for systematic CKD detection and follow-up, while the latter sets the framework for health care providers and ensures the provision of UHC for treatment from the early stages of CKD to dialysis and kidney transplantation.

Thailand (upper-middle-income country): unique CKD prevention program

The prevalence of CKD stage 3 and 4 in Thailand is 9.3% for those older than 18 years, representing 4.8 million people, with a further 4.6 million people with CKD stage 1 and 2. 68 Diabetes mellitus and hypertension are the main causes of CKD. 69 The Ministry of Public Health has divided the country into 12 health care regions (excluding the Bangkok metropolitan area), with each region consisting of 4 to 8 provinces covering a population of ∼5 million. Within each province, there are between 6 and 30 districts, each with their own district hospital. Within each district, there are a further 5 to 10 subdistrict health offices. A district hospital usually comprises general practitioners, nurses, pharmacists, a physical therapist, and, in larger hospitals, a nutritionist. At each subdistrict health office, there are 1 to 2 public health officers and 1 to 2 community nurses, caring for anywhere between 3000 and 5000 inhabitants. Community nurses are responsible for basic drug prescription, on behalf of the district hospital, and for treating common ailments. Moreover, there are village health volunteers, grassroots personnel, who provide a connection between villagers and health personnel and cover public health issues at the village level. Basic health care programs in Thailand are implemented through this infrastructure. Across Thailand, there are ∼10,000 subdistrict health offices and >1 million village health volunteers. 70

Diabetes mellitus and hypertension are the 2 most common NCDs in rural areas. To cope with these problems, general practitioners, diabetes/hypertension case manager nurses, and multidisciplinary care teams work together at the district hospital level. Community nurses and village health volunteers are also responsible for medication refills for stable patients and facilitate patients’ self-care and any necessary lifestyle modifications. Key performance indicators from all public hospitals are transferred to the Health Data Center of the Ministry of Public Health. Table 4 illustrates a set of key performance indicators of diabetes and hypertension. 71

Table 4

Key performance indicators of diabetes mellitus and hypertension reportable to the Ministry of Public Health, Thailand

HbA 1c , hemoglobin A 1c .

It is challenging to use the limited resources available in the country to delay the progression of CKD on a national scale. Community nurses and village health volunteers, who are more present in the community, can be trained to decrease the reliance on multidisciplinary care teams who are present only in hospitals. This is a paradigm shift from hospital-based to a joint hospital-community–based approach.

To test this concept of care, a pilot project was launched a few years ago in Kamphaeng Phet Province, 400 km north of Bangkok. In brief, this study took place at 2 districts within the province. 72 In district hospital A (control), there was no multidisciplinary care team available and patients were cared for as usual by general practitioners and diabetes/hypertension/NCD nurses. There were no home visits by community nurses/village health volunteers. In district hospital B (intervention), multidisciplinary care teams, community nurses, and village health volunteers were trained on CKD with information on lifestyle modifications and dietary counseling. Educational materials and a protocol checklist were provided in accordance with the Nephrology Society of Thailand and international guidelines on CKD management. 73 , 74 CKD cases were referred by community nurses/village health volunteers during regular home visits to multidisciplinary care teams at the district hospital. The community nurses/village health volunteers also had a checklist on exercise, smoking cessation, avoidance of analgesic/nonsteroidal anti-inflammatory drugs, and avoidance of high salt and protein intake. Two years later, patients with CKD in the intervention group had lower dietary salt and protein intake and lower rates of eGFR decline than did those in the control group. 75 An economic evaluation demonstrated that this program was cost-effective. 76 The conclusions of this study imply that integrated care provided by multidisciplinary care teams at district hospitals in combination with home visits by community nurses/village health volunteers could help delay the progression of CKD through lifestyle modifications, without the intervention of specialists.

In 2015, the Ministry of Public Health announced the prevention of CKD as a national health priority. All referral, provincial, and district hospitals were requested to set up multidisciplinary care teams around CKD. A protocol checklist on the essential parts of CKD management and key performance indicators of CKD were agreed upon. A reference eGFR equation was declared, and the implementation of national serum creatinine standardization is underway.

Our findings illustrate favorable outcomes in a CKD prevention program at a national scale ( Table 5 ). 71 It is yet too early to identify absolute eGFR change over time. We recognize that the key success factors behind our CKD program are the homogeneity of an existing well-organized primary health care system, the inclusion of an integrated care team at district hospitals, frequent home visits by community nurses and village health volunteers in the program, and, most importantly, a strong sense of belonging to their native homeland of the personnel. Our experience shows that in developing countries such as Thailand, combating CKD progression under limited resources is possible, provided that an integrated care program is developed, including trained multidisciplinary care teams, educational materials, protocol checklists, and dedicated community nurses and village health volunteers. This program could be sustainable and cost-effective.

Table 5

Key performance indicators of CKD reportable to the Ministry of Public Health, Thailand

ACEi, angiotensin-converting enzyme inhibitor; ARB, angiotensin receptor blockade; CKD, chronic kidney disease; eGFR, estimated glomerular filtration rate; HbA 1c , hemoglobin A 1c .

United Arab Emirates (high-income country): early detection of CKD in Abu Dhabi

In 2012, the prevalence of ESKD and CKD in Abu Dhabi were unknown, but the population on dialysis was doubling approximately every 5 years. Of the new patients starting dialysis, 90% started with <90 days of predialysis care, only 2% of patients had a fistula at their first dialysis session, and patients primarily started on HD. There were no systematic attempts at early detection and management of CKD as the projection of future patients with CKD was unknown.

SEHA, the government health system within Abu Dhabi, has a single electronic medical record system that covers the whole country. The data contain patient demographics and information on all patient encounters. Between September 2011 and October 2012, data on 212,314 adults were extracted from the electronic medical record. The eGFR was calculated for every serum creatinine measurement and was used to calculate an estimate of CKD prevalence on the basis of the population breakdown. The prevalence of CKD stage 2 to 5 was estimated to be 22.6% in Emirati men, 12.9% in Emirati women, 26.6% in foreign men, and 16.5% in foreign women.

To address the relative high rates of CKD, extensive discussions occurred at both primary and secondary levels of care; a potential solution was introduced in February 2014. This solution included the adoption of several strategies: the automated calculation of eGFR using the CKD Epidemiology Collaboration 77 equation embedded within the electronic medical record; an automated addition of International Classification of Diseases 9th and 10th Revisions codes for CKD to the electronic medical record based on Kidney Disease: Improving Global Outcomes (KDIGO) CKD 2012 criteria 74 ; an algorithm-based management of CKD; online physician decision support for referral and medication management; physician feedback at the individual, practice, and regional level; and kidney nurses working both at the primary level of care and in multidisciplinary advanced CKD clinics.

At the outset of the program, 35% of patients with CKD stage 3 to 5 managed within primary care and 20% managed within secondary care were taking nonsteroidal anti-inflammatory drugs. From 2011 to 2012, these rates fell to 15% and 10%, respectively. To date, 29,000 patients with CKD have been identified, of whom 25% are at high risk of progression as per the KDIGO classification. 74 More than 3500 patients, however, have had a >30% improvement in eGFR over a 2-year follow-up period. The presentation rate for dialysis with <90 days of predialysis care (emergency start) has fallen from 90% to 35%. The proportion of patients commencing dialysis with an arteriovenous fistula has risen each year, with 34% starting dialysis with a fistula in 2018.

This program of early detection and management of CKD has been extremely successful and continues to improve outcomes for Emirati patients. The program has clearly demonstrated the ability to modify physician prescribing behavior and exemplifies value-based health care with improved patient outcomes at a reduced cost to the health system. Data analysis is ongoing, with more work needed on defining the incidence density of progression to KRT and death as well as hazard ratios of progression and the impact of changes in medication regimen.

HD Strategy Cases

Malaysia (upper-middle-income country): near-universal coverage for dialysis.

Nephrology services in Malaysia have come a long way, from a humble beginning in the 1960s with steady growth to the mid-1970s, when the country was still categorized as an agricultural-based LMIC. With rapid development in the last 2 decades, a full range of nephrology services is now readily available throughout the country at an affordable cost. For an upper-middle-income country, Malaysia has an impressive treatment rate for patients with ESKD.

Action and strategies for HD and PD

How does malaysia achieve near-uhc for dialysis.

Over the last 5 decades, the nephrology community in Malaysia has worked toward achieving the World Health Organization indicators of UHC 78 of dialysis via good stewardship and governance (provided by the government), nephrology champions, key opinion leaders, and professional societies via the following strategies.

Effective stewardship of health reforms

• • Strong support via the MOH by providing sufficient funding for the development, operation, and subsidy of dialysis centers and services throughout the country.
• • Ongoing planning over the last 40 years.
• • Cooperation between private corporations and NGOs to develop more HD centers.

Effective stewardship of public funds

• • Allocation of more funds from the MOH to expand services, particularly in rural areas.
• • Allocation of subsidies to NGOs by the MOH and Treasury.
• • Outsourcing of dialysis to private centers by the Public Service Department, Social Security Organization, and zakat. All of the above agreed to consider dialysis as rehabilitation therapy.
• • Purchasing HD services from all qualified providers.

These measures were a major departure of standard policies of the public sector in the 1970s and 1980s. The funding of dialysis was one of the very first mixed public, private, and NGO financing operations in Malaysia.

Stewardship in proper training of doctors and allied health staff

• • Emphasizing the importance of a proper training program for nephrologists, kidney nurses, and allied head staff, with a syllabus, logbook, and exit evaluation where trainees are assessed by local and external examiners.

Ensuring quality and integrity

• • Introduced quality initiative efforts, such as the development of practice guidelines on KRT and a document on Hemodialysis Quality Standards.
• • Established National Renal Registry (jointly between the MOH and the Malaysian Society of Nephrology) to provide accurate data for health care planners, clinicians, and multinational dialysis industry companies.

Public–private partnership

• • There continues to be collaboration among government, professional societies, private industry, NGOs, and local manufacturers (consumables and solution). There is also widespread implementation of health care laws that have enabled organizations to start an HD facility irrespective of whether they have links to a hospital.

During the last 3 decades of transformation from LMIC to upper-middle-income country, the above measures have resulted in near-universal access to dialysis for all patients with ESKD, at a reasonable cost, with comparable quality to many developed countries.

Malaysia has an interesting dual-tiered system of health care services consisting of a government-led public sector that coexists alongside a private-NGO sector, creating a synergistic public–private/NGO model. The government is the main source of funding for new and existing patients on dialysis (55%–60%); out-of-pocket payments or self-funding for dialysis was ∼26% to 30%; and funding from NGOs remained at 11% to 15% over the years. 78 Public financing, mainly through taxation and/or social health insurance (e.g., Social Security Organization), is the dominant form of financing for dialysis. The majority of patients on HD are treated in the private/NGO sector (54%), but almost all patients on PD are treated in government facilities (97%) via financing operations described above. 79 The total health expenditure in Malaysia was 4.21% of the gross domestic product (RM51,742 million) in 2016 80 ; the total spending on dialysis was US$100 million, accounted for 1.72% of the total health expenditure in 2005. 81

In Malaysia, diabetes and hypertension were the most common causes of ESKD, 82 with the prevalence of 17.5% and 30.3%, respectively, in those older than 18 years. 83 The prevalence of CKD stage 5 was 0.36% in those older than 18 years. 84 Recent forecasting estimates that the cost to treat 51,269 patients on dialysis in the year 2020 will be US$384.5 million. 85 This burden has implications for future health care financing. The prevalence of ESKD is increasing at an alarming rate. Options proposed to tackle this issue include early medical intervention to slow the progression of CKD in high-risk patients, the promotion of kidney transplantation, and the use of more cost-effective dialysis therapies. In Malaysia, kidney failure prevention initiatives have been carried out nationwide, including patient screening in the primary care setting, the prevention of kidney failure workshops targeting primary care doctors and allied health care staff, the development of clinical practice guidelines on CKD management and nephrology services operational policy, and national public awareness of World Kidney Day. Despite kidney transplantation providing the best KRT option, the transplantation rate remains low at 3 pmp owing to a lack of donors, leaving the choice of KRT between HD and PD. 82

In Malaysia, citizens can access the subsidized dialysis services provided by the MOH at university hospitals, Ministry of Defense hospitals, and local authorities. Public sector health care services are considered a national health service with its tax-based financing and heavy subsidies. NGOs and political parties also provide support either by providing services (e.g., dialysis services by the National Kidney Foundation), subsidizing part of the payment, or assisting in the appeal for public donations. These measures combined have resulted in expanded coverage of stand-alone dialysis services over the years ( Figure 4 ), with the number of dialysis centers across Malaysia increasing from 205 in 2000 to 758 in 2014. 79 , 81 , 86

Providing dialysis to meet Malaysian needs. Dialysis treatment by sector (per million population [pmp]), 1980–2016. 79 , 81 , 86 BAKTI, Badan Amal dan Kebajikan Tenaga Isteri-Isteri Menteri dan Timbalan Menteri (Charitable and welfare bodies of the wives of Ministers and deputy Ministers); HD, hemodialysis; JPA, Jabatan Perkhidmatan Awam (Public Service Department) (civil servants and their dependants would be reimbursed by the government); MOH, Ministry of Health, Malaysia (public health care services are funded through general taxation, with annual health budgets allocated by the Ministry of Finance to the MOH); NGO, nongovernmental organization (NGOs are providing support to access dialysis by either providing some of these services [e.g., dialysis services by the National Kidney Foundation {NKF}], subsidizing part of the payment, or assisting in appealing for public donations [e.g., NKF]); SOCSO, Social Security Organization (a government-run social insurance body that receives mandatory contributions from private-sector employees earning below US$950 per month); YKN, Yayasan Kebajikan Negara; Zakat, state-run Islamic social welfare organizations reimburse eligible patients for certain treatments and dialysis, which was included as a rehabilitation therapy.

Between 2005 and 2014, private dialysis centers have almost tripled from 6 to 14 pmp, NGO centers increased from 4 to 5 pmp, and the pmp rate of public centers remained unchanged. Private dialysis centers are distributed mainly in economically developed west coast states of Peninsular Malaysia. The government operates most of the dialysis centers in less developed areas.

Reimbursement by government agencies per HD treatment at private and private for-profit HD centers has not changed since 1999 and remains at about RM120 to RM200 and at RM150 to RM200 per dialysis session, respectively. 81 There were 37,183 patients on dialysis in 2015. 79 In 2015, the incidence and prevalence rates of dialysis were 261 and 1295 pmp, respectively. 82 These rates compare favorably to more developed countries in the region, such as Singapore, South Korea, and Hong Kong. 87

In summary, the number of patients receiving KRT has increased sharply over the last few decades. Malaysia, an upper-middle-income country, has been able to achieve near-UHC for dialysis and consistently reports outcomes; this is usually observed only in industrialized nations. This achievement is due to good stewardship and governance shown by the government, professional societies, NGOs, and clinical champions.

Malawi (low-income country): unique strategy for ESKD care

Malawi, a country of 16.7 million people, has offered free HD services for both AKI and ESKD since 1998. 88 , 89 The first dialysis unit was established in 1998 in Lilongwe with a donation of 4 Gambo AK 95 machines (Baxter International Inc.; Deerfield, IL). As the original HD machines were in poor working order, with spare parts difficult to obtain, patient care was often interrupted and outcomes were generally poor. A second unit was established in Blantyre in 2011 with 4 of the same HD machines to face the increasing demand for services and to reduce the large distances that patients would be required to travel to access dialysis.

All HD machines and water plants were replaced at both units between 2013 and 2014. Lilongwe now has 10 stations and Blantyre has 5. A public–private initiative with Fresenius Medical Care (based in South Africa) has provided 5 additional units; the water plant and dialysis machines were offered at no direct capital cost as part of a 5-year contract to purchase consumables from Fresenius. Training of medical and nursing staff has also been a core component of improved service delivery in Blantyre through the Sister Renal Center Program from the ISN. Dialysis is provided on a twice weekly basis, which has increased the number of patients treated, though at a cost of delivering a lower dialysis dose.

Although HD services have expanded, providing integrated care for kidney disease remains a challenge. Regular adult and pediatric nephrology clinics help identify patients approaching ESKD, but the overwhelming majority of patients present in extremis, requiring emergency dialysis for both AKI and ESKD. Screening patients for CKD in high-risk groups such as those with diabetes, hypertension, and HIV remain challenging because of many reasons including the cost of materials such as urine dipstick and laboratory reagents, a low awareness of kidney disease among the public and medical professionals, and the sheer volume of patients.

There is currently no access to transplantation within Malawi; instead, patients are sent overseas for living donor transplants at a cost of ∼$30,000 borne by either the patient or the government. PD has been delivered when suitable supplies of PD fluid and equipment have been available, but these periods are brief and difficult to sustain. Thus, HD remains, and is likely to remain, the predominant dialysis modality in Malawi. Vascular access for HD also remains a challenge, and surgical expertise is urgently required to address this. Some patients do have a native arteriovenous fistula that was created by either a surgeon in Malawi or visiting specialists, but a regular vascular access service has not formally been established. Complications from both temporary and semipermanent HD catheters are both common and severe.

Significant efforts are being made to provide integrated care for CKD and AKI in Malawi. Both HD units have focused on the development of predialysis nephrology services in terms of clinical activity, teaching, and research. Screening for CKD in high-risk patients such as those with diabetes and HIV has identified an unexpectedly high prevalence of CKD; this further highlights the importance of robust mechanisms for the early detection and management of CKD. 90 , 91 Clinical expertise for nephrology in Malawi remains a significant challenge—the country has just received its first qualified nephrologist. The nursing staff in dialysis units represents an excellent source of clinical expertise and have been instrumental in advancing the delivery of dialysis care and education together with physicians and clinical officers.

Kidney services in Malawi have been supported by bidirectional teaching and training programs with Barts Health NHS Trust in the United Kingdom. This partnership has helped develop clinical, research, and teaching expertise. The volume of patients with kidney disease in Malawi, both acute and chronic, has required the development of a specialist kidney ward to care for patients with both AKI and ESKD at Queen Elizabeth Central Hospital in Blantyre. To address the needs of patients who do not proceed with dialysis, a partnership with palliative care services has been established. This service provides holistic and symptomatic care for patients with ESKD in the absence of dialysis. 92 , 93

Preliminary discussions around providing transplantation in Malawi have identified attendant laboratory, pharmacy, clinical, legal, and ethical challenges; although difficult, they are not impossible to overcome. Although transplantation in Malawi will ultimately lead to a better quality of life for patients and lower direct cost to the government, it remains some years away.

The total number of patients on dialysis in Malawi has dramatically increased with the provision of new equipment, allowing better access to dialysis for both patients with ESKD and those with AKI. 88 Increasing dialysis has saved lives but at a high cost to the health economy, and the HD capacity is not yet sufficient to treat every case of ESKD. Patient dialysis groups in Malawi have become strong and vocal advocates for services for patients with kidney disease and are instrumental in sustaining and improving HD services in conjunction with clinicians. The educational activities undertaken over the last 7 years have strengthened the clinical and research expertise in Malawi. There are significant challenges ahead for kidney care in Malawi, but working with the ISN on the Kidney Care Network project has the potential to make a major impact on the care of AKI, ultimately saving lives. Strengthening the breadth and depth of clinical nephrology expertise sustainably will require continued financial and operational support from the Malawi government and is essential to a national kidney strategy in Malawi.

Kenya (lower-middle-income country): upscaling HD

Kenya, with a population of >50 million, has a huge number of patients with kidney failure and who would potentially benefit from KRT.

HD was first offered in Kenya in 1964 when an HD machine had to be flown in from England along with a team of doctors for a British soldier. In 1970, regular HD was offered in an intensive care unit at the referral hospital, Kenyatta National Hospital (KNH) in the capital Nairobi. PD was introduced in 1971, but this expertise was available only in Nairobi. A kidney unit was established at KNH in 1979, and it remained the only unit in the country until 1982, when private hospitals started offering both HD and PD. As these units were located only in Nairobi, other regions still had no access to HD and anybody who needed dialysis traveled to the capital city. By 1990, most provincial hospitals had the personnel to provide acute PD and a few patients started on continuous ambulatory PD. With the introduction of the double bag system in 2002, PD slowly became costlier than HD and few patients opted for this modality. Starting in 2002, satellite HD units appeared outside Nairobi; by 2006, however, there were still only 4 government hospitals offering HD across the country.

In 1978, the first ever kidney transplantation was carried out in a patient whose horseshoe kidneys had been mistaken for an abdominal mass and inadvertently removed; she lived for 1 year after surgery. A few private hospitals started kidney transplantation in 1984, though the numbers were low and irregular. By 1988, KNH was also doing kidney transplantation; however, over the next 20 years, only 130 had been done.

In 2010, it became clear that the government could no longer cope with the growing burden of ESKD and the Kenya Renal Association drafted a plan to increase kidney services ( Table 6 94 , 95 , 96 , 97 , 98 , 99 ).

Table 6

Progress of kidney services in Kenya since 1995

Actions and strategies for CKD/ESKD care

A partnership between KNH and Novartis Pharmaceuticals was established in 2010 to retrain the transplantation team at KNH. Over the next few years, with travel between Spain and Kenya, the team was fully equipped to run a successful transplantation program. The number of transplantations increased, and expertise was shared with some of the private hospitals.

Because of lobbying from powerful dialysis patient groups to improve the situation in the country, the government implemented the Kenya Renal Association recommendations to increase kidney services in 2015. Recommendations that were implemented included the establishment of at least 1 HD unit in each of the 47 counties with 5 machines each over a 2-year period. This task involved the government creating new structures in regions that did not have the necessary infrastructure. Currently, 90% of the county units, representing 40% of dialysis units in the country, are in place and delivering services to patients.

The National Hospital Insurance Fund, established in 1966, provides UHC to all Kenyans 18 years or older and who have a monthly income of >US$10; monthly contributions range from US$5 to US$17. The National Hospital Insurance Fund has the aim of ensuring access to affordable, sustainable, equitable, and quality care and was entrusted by the government to provide funds to reimburse dialysis centers.

Kenya has been entrusted with the East African Kidney Institute of Urology, Nephrology, and Transplantation as part of a new initiative set up by the African Development Bank. The overall objective of this institute is to develop a world class institution that facilitates the realization of the vision to strengthen health training, research capacity, and provision of services to the local and international communities, more so in the East and Central African regions. Although a full nephrology fellowship program is 2 years in length, to address the urgent need for trained doctors, the institute created a 3-month preceptorship.

Despite the advancements in infrastructure, many challenges remain ( Table 7 ). A good supportive structure is needed to ensure the success of the program. Involving partners such as the World Health Organization, United Nations, and ISN to support the program and endorse safety is important. Adapting good guidelines that suit the patient needs is critical.

Table 7

Challenges for the growing kidney replacement therapy program in Kenya

BMD, bone mineral density; PD, peritoneal dialysis.

The MOH is charged with implementing this program and to ensure standards are met by empowering the medical board. Funding comes from the National Hospital Insurance Fund, and the supply of medicines comes from the Kenya Medical Supplies Authority, a state corporation whose mandate is to procure, warehouse, and distribute drugs and medical supplies for prescribed public health programs.

In 2017, a health bill was passed into law, which enables public hospitals in Kenya to start deceased donor (DD) kidney transplantation. Once implemented, this law will ease the number of patients waiting for a kidney transplantation. The Kenya Renal Association, which oversees the program, has started creating a registry for dialysis and transplantation. Nephrologists work closely with the MOH to ensure standards for safe HD are met by each unit. A national epidemiological survey to determine the number of patients with kidney disease in Kenya is being planned. Despite all these systems being put into place, further team efforts are required to ensure success.

PD Strategy Cases

South africa (upper-middle-income country): pediatric pd for eskd.

ESKD in pediatric patients is a significant problem in South Africa as it is in many parts of the world. Adults often get preference in terms of dialysis and transplantation.

Facilities are present in 3 of the larger academic centers—Johannesburg, Durban, and Cape Town—to provide KRT and transplantation to children who have access to these centers. There is lobbying at the local hospital level for the purchase of pediatric and, in some centers, infant dialysis equipment. Provision for pediatric facilities has also been facilitated in some private facilities. There has been some lobbying at the government level for specific pediatric support but with limited success.

Like adult centers in South Africa, pediatric centers do not provide chronic dialysis for children unless they are suitable for transplantation. This has proved difficult as many children have started on acute dialysis, only to be changed to conservative care as their family and home facilities are not suitable for long-term dialysis. This transition plan has been difficult for some centers, and thus long-term dialysis has been started in some children without a satisfactory plan for future dialysis.

The first strategy in developing a pediatric dialysis program in South Africa is to create pediatric programs where adult programs exist. Adult programs can then provide the initial knowledge and technical support associated with caring for adolescents and bigger children.

The next strategy is to use a PD-First approach for children who have been accepted for transplantation and thus dialysis. This uses automated home cycle machines for overnight dialysis while children are sleeping, enabling them to continue school during the day. Families are trained during an in-patient visit over a period of 2 weeks and then examined on their technique before discharge. In most centers, a single home visit is done to see if this is a suitable option as well as to advise them in practical matters of having a dialysis machine at home. There are currently 2 marketed machines for home automated PD in children: Homechoice Claria by Baxter International Inc. and Sleepsafe by Fresenius Medical Care (Waltham, MA).

Advanced technology (Claria Baxter) now allows the remote daily follow-up of overnight dialysis patterns.

Other strategies include the training and employment of specialized advanced nurse practitioners who can operate in- and outpatient PD programs.

Children who have failed PD and would go onto HD provide the challenge to appropriate pediatric and infant HD lines and filters. While pediatric centers are being established, bigger children will often initially dialyze in adult facilities. This emphasizes the need for training of medical and nursing staff in both adult and pediatric centers.

The ultimate goal in pediatrics is to arrange kidney transplantation as soon as possible; this avoids stunting due to long-term dialysis. To ensure the success of a pediatric transplantation program, it is critical to have a few dedicated centralized areas across the country. This will centralize the skills base and improve results.

Over the last 10 years, pediatric nephrology has grown in South Africa from 10 to 27 active pediatric nephrologists. Over the last 15 years, at the Red Cross Children’s Hospital alone, we have trained a further 24 pediatric nephrologists from elsewhere in Africa.

The challenge remains to increase the training of nurses, technicians, and advanced nurse practitioners to provide dialysis and transplantation for children.

Overall, the situation is slowly improving: in December 2016, the South African Renal Registry found that there were 54, 53, and 86 patients younger than 19 years on PD and HD, and with a functioning transplanted kidney, respectively (with permission from Razeen Davids, Webmaster of South African Renal Registry). The result of staff training as well as collaboration with adult nephrology teams gives hope for the future of pediatric patients with nephrology disorders in South Africa as well as in other parts of Africa.

Transplantation Strategy Cases

South korea (high-income country): system development for dd kidney transplantation.

Kidney transplantation improves the quality of life of patients with ESKD and is cost-effective. The first living-donor kidney transplantation in Korea was conducted in 1969, and the first DD kidney transplantation was conducted in 1976. The number of hospitals performing kidney transplantation has since rapidly increased. However, as most kidneys are donated within families and there is an increasing trend of smaller families, living donor kidney donation has stagnated. Furthermore, the revered traditional Confucian view teaches that your entire body was given to you by your parents and people are taught to value their bodies. The meaning of this teaching has been overinterpreted to mean value all parts of human body even after death , resulting in the rejection of organ procurement from DDs.

To address the shortage, in 1988, the Korean Society for Transplantation proposed DD organ transplantation legislation to the congress. Although DD kidney transplantation was being conducted by several hospitals at the time, it took 10 years to secure legal support for it. This situation resulted in kidneys from the poor being traded on the black market. Thus, a renewed legal review of brain death was initiated, and the Organ Transplantation Law was passed in 1999 and the Korean Network for Organ Sharing was established in 2000. The major role of the Korean Network for Organ Sharing was to review the legal and ethical relationship between living donors and their recipients. It also became responsible for the management of the transplantation wait-list and the allocation of DDs. Over time, the Korean Network for Organ Sharing became a national authority, regulating organ transplantation–related activities.

The overly tight regulation of each process soon resulted in a decline in kidney transplantation, and the annual number of patients who died while waiting for organ transplantation increased. Patients became increasingly desperate, and overseas transplantation rapidly increased starting in 2002. The Organ Allocation Study Group, under the Korean Society for Transplantation, elected to change its name to the Deceased Organ Donation Improvement Program Committee in 2009 and started devoting its efforts to formulating strategic plans for reactivating DD organ transplantation. The Organ Allocation Study Group cooperated with the congress in revising the existing law in 2010, adding a law on mandatory reporting, the establishment of an independent organ procurement organization, and the implementation of a transplantation registry.

Vitallink is an NGO that was established by the Korean Society for Transplantation in August 2009 to promote public awareness of DD organ donation. Vitallink educates medical and high school students about organ donation. Vitallink also established the Korean Organ Donation Network in 2010 to conduct consistent education for NGO leaders. They jointly collaborate with Catholic and Buddhist NGOs to host various campaigns. Finally, Vitallink has been supporting the development of the Asian organ transplantation program through annual workshops and the provision of training courses for medical professionals from Korea and abroad.

The Korea Organ Donation Agency was established in 2009. Currently, this agency has jurisdiction over 3 regional divisions. The main responsibility of procurement coordinators is to discover potential DDs by visiting hospitals. When the Korea Organ Donation Agency receives notification of a potential brain death donor, they first visit the hospital to conduct a primary medical evaluation for donor eligibility and then obtain consent from the family, process the evaluation of brain death, and contact and coordinate the organ procurement teams and operations. After donation, they collect the body to transfer to the family and provide emotional support. The Korea Organ Donation Agency is also in charge of education for medical professionals and donor families.

In 2014, the Korean Society for Transplantation established a web-based registry, the Korean Organ Transplantation Registry. The Korean Organ Transplantation Registry collects data on ∼85% of all organ transplantation and issues an annual report. They have hosted various seminars and provide research grants and awards. The Korean Organ Transplantation Registry has now started the Asian Organ Transplantation Registry (ASTREG).

The rate of DD organ transplantation in Korea has greatly increased because of the adoption of new strategies ( Figure 5 ). 100 This increase has led to a decrease in the number of overseas transplantation ( Figure 6 ). 100 As of 2017, the number of DD organ donations in Korea was 10.7 pmp, the highest in Asia; however, Korea is still ranked only 37th worldwide. To provide a better life for patients with ESKD in Korea, partnerships will be required with other Asian countries in organ transplantation.

Number of kidney transplantation cases in South Korea. Data from Ahn HJ, Kim HW, Han M, et al. Changing patterns of foreigner transplants in Korea and overseas organ transplants among Koreans. Transplantation. 2018;102:310–317. 100 Copyright © 2018 Wolters Kluwer Health, Inc.

Relationship between the number of overseas organ transplantation cases and the number of deceased organ donors in South Korea. Doha: Doha, Qatar; DOI, Declaration of Istanbul; IOPO, independent organ procurement organization; KODA, Korea Organ Donation Agency; KOTRY, Korean Organ Transplantation Registry. Reproduced with permission from Ahn HJ, Kim HW, Han M, et al. Changing patterns of foreigner transplants in Korea and overseas organ transplants among Koreans. Transplantation. 2018;102:310–317. 100 Copyright © 2018 Wolters Kluwer Health, Inc.

Ghana (lower-middle-income country): framework for the development of living donor kidney donation

In 2008, a living donor kidney transplantation program was established in Ghana in collaboration with the Transplant Links Community and the Queen Elizabeth Hospital Birmingham, part of University Hospitals Birmingham NHS Foundation Trust–ISN Sister Renal Center. Our model for developing a kidney transplant program involved 3 stages ( Figure 7 ): the pre-transplant stage, crucial in ensuring effective planning and long-term sustainability; and the transplant and post-transplant stages, important for clinical capacity building, patient care, monitoring, and evaluation, which then feed back into the pre-transplant stage to optimize the transplantation process.

Model for kidney transplantation in Ghana. HDU, high-dependency unit; ICU, intensive care unit.

Pre-transplant planning

The decision to undertake living donor kidney donation was based on the youthfulness of patients on dialysis, the cost of HD (beyond the means of most patients), and the opportunity for an improved quality of life. First, a knowledgeable and committed champion was identified to lead, drive, and coordinate the program through effective and ongoing engagement with all stakeholders. 101

The second step involved an assessment of the capacity of the hospital to ensure that it could support kidney transplantation. A checklist was developed to assess infrastructure : personnel, policies, protocols, laboratory support, and medicine availability. This was implemented by a team including heads of departments of medicine, surgery, pharmacy, pathology, and anesthesia. The assessment of clinical capacity included identification of comprehensive protocols for both donor and recipient work-up and immunosuppressant management, including a choice of affordable generic immunosuppressants. Identified key gaps included no legal framework for organ transplantation, a lack of transplantation surgeons, and the nonavailability of protocols and some immunosuppressive drugs.

The third step was the development of a legal and ethical framework for living donor kidney donation. In the absence of a national legal framework for transplantation, hospital management and the MOH decided to adopt the Declaration of Istanbul on organ trafficking and transplant tourism as a means of ensuring best practices. 102 , 103 To work within the principles of the Declaration of Istanbul, only living-related donors were considered. In addition, a transplant ethics committee was established, guided by the UK Human Tissue Act (2004), the World Health Organization Guiding Principles on Human Cell, Tissue and Organ Transplantation, and the Declaration of Istanbul, to independently assess the transplantation process and to avoid coercion and organ trafficking. 104 , 105 , 106 The committee comprised a retired professor of surgery, a priest, a lawyer, a clinical psychologist, and a professor in public health.

The final step was financing . Given the projected costs of a transplantation program, the hospital engaged funders including the National Health Insurance Scheme and the Social Security and National Insurance Trust. The hospital also provided letters to patients to solicit funds for transplantation. The Transplant Links Community raised enough funds to cover the costs of the visiting transplantation team, volunteers who visited during their holidays. The National Kidney Foundation–Ghana raised funds to support medicines and laboratory investigations. The cost of a kidney transplantation was estimated at US$10,000 per transplantation, including pre- and post-transplantation laboratory investigations, hospital admission, both operations (donor and recipient), postoperative management, and a 3-month supply of immunosuppressive drugs. Corporate organizations sponsored transplantation patients to ensure that all patients, even those who could not afford it, were provided for, including ongoing immunosuppressants, which average US$3600 to US$4000 per year.

• (i) Development of local clinical capacity for transplantation : A multidisciplinary clinical team made up of local nephrologists, urologists, anesthetists, clinical pharmacists, and critical care nurses was created. Clinical expertise in kidney transplantation was achieved with periods of training of surgeons and physicians in South Africa and the United Kingdom through ISN fellowship awards.
• (ii) Donor and recipient selection: Recipients along with suitable living donors were selected from dialysis centers. Two local nephrologists applied standard guidelines to evaluate donor and recipient pairs. Donors and recipients were provided with counseling and educational materials on the risks and alternatives available. Materials were provided in English; however, a team of local nurses were able to counsel in the local language. After the medical evaluation, donors and recipients were further evaluated by the transplantation surgeon and the anesthetist. The ethics committee provided an independent assessment and interviewed each pair separately and together. Once the committee was satisfied that the pair were genuinely related, that the donor was not acting under any coercion, and that the Declaration of Istanbul was adhered to, written approval was given to proceed to the transplant stage. Two other nephrologists from the international team reevaluated the donor-recipient pair before surgery.
• (iii) Transplantation procedure and follow-up: The University Hospitals Birmingham NHS Foundation Trust and Transplant Links Community teams made 2 initial visits before the first transplantation and then performed the kidney transplantations on subsequent visits. These visits enabled hands-on training of local surgeons, anesthetists, nurses, and theater technicians. The Ghanaian team adopted the University Hospitals Birmingham NHS Foundation Trust protocols, with minor modifications, for patient management and follow-up pre-, intra-, and postoperation.
• (iv) Monitoring and evaluation of the program involved entering all patients into a database for ongoing follow-up: After the first set of kidney transplantations done in 2008, the donor work-up process was reevaluated and a new donor work-up sheet was designed to reduce the cost of the donor work-up ( Appendix 2 ). Outcome of the transplantation program has been good: in the first 17 transplantations done, there was 100% 1-year patient survival and 91.7% graft survival. 106

ESKD is a global problem and cuts across all sociodemographic differences and cultural context. Despite the diversity in countries discussed here, common themes emerged in the approach to reducing the burden of CKD/ESKD:

• • the importance of screening high-risk populations and multidisciplinary care in slowing the rate of progression of CKD;
• • improving access to KRT options (HD, PD, DD, and living donor transplantation) to all patients (including rural) affected by ESKD;
• • moving toward financially sustainable KRT options; and
• • the recognition of the harm of nephrotoxic drugs.

Countries have made great strides to date in recognizing the importance of and developing strategies to address CKD/ESKD across different income status ( Table 8 ). Future work needs to continue to rely on strong data collection and analysis to identify key risk factors across populations, enact strategies that delay the onset and progression of CKD, increase universal access to appropriate KRT, and use the leverage of international collaboration to strengthen systems around the world ( Figure 8 ). Capitalizing on partnerships that can limit the financial burden on LMIC should continue to be explored. A cohesive collaborative approach among experts around the globe will continue to strengthen the international nephrology community and improve outcomes for patients with CKD/ESKD.

Table 8

Featured strategies of CKD/ESKD care stratified by World Bank economic classification

CKD, chronic kidney disease; ESKD, end-stage kidney disease; KRT, kidney replacement therapy; NGO, nongovernmental organization; NSAID, nonsteroidal anti-inflammatory drug; UHC, universal health coverage.

Strengths, weaknesses, opportunities, and threats (SWOT) analysis of chronic kidney disease (CKD)/end-stage kidney disease (ESKD) strategies .

Publication of this article was supported by the International Society of Nephrology.

DCHH reports grant support from the National Health and Medical Research Council. GGG reports grant support from CloudCath and ICON Clinical Research, Ltd. BLG reports lecture fees from Baxter, Fresenius Medical Care, Sanofi, and Kwoya Kirin and grant support from Baxter and Kwoya Kirin. JD reports consulting fees from the International Society of Nephrology. All the other authors declared no competing interests.

Acknowledgments

This article emerged as an individual product of the International Society of Nephrology’s 2nd Global Kidney Health Summit held in Sharjah, United Arab Emirates, in March 2018 and portions of the material in this document have been published in the full report from the summit (Harris DCH, Davies SJ, Finkelstein FO, et al. Increasing access to integrated ESKD care as part of universal health coverage. Kidney Int. 2019;95:S1–S33 1 ). In addition to the International Society of Nephrology, support of the summit was provided through unrestricted grants from Baxter and B. Braun.

MT was supported by the David Freeze Chair in Health Services Research at the University of Calgary. The Libin Institute at the University of Calgary is the host institution for the Pan American Health Organization/World Health Organization’s Coordinating Centre in Prevention and Control of Chronic Kidney Disease.

The authors thank Drs. Hong Teck Chua, Chwee Choon Tan, and Zaki Morad for assisting with the preparation of the section on Malaysia and Dr. Shang-Jyh Hwang for the section on Taiwan. The authors thank the patients; the donors; Mr. Charles Antwi; Professor Nii Otu Nartey, former Chief Executive Officer of the Korle Bu Teaching Hospital; and the doctors; especially Dr. Dwomoa Adu, Dr. Bernard Morton, Professor Michael Mate Kole, Mr. Andrew Ready; and the Transplant Links Community team who worked together to make transplantation possible in Ghana. The authors also thank Dr. Manar Bushra, Director of the Sudan National Center for Kidney Diseases and Surgery, for the statistics provided.

The views expressed in this commentary are solely the responsibility of the authors and they do not necessarily reflect the views, decisions, or policies of the institutions with which they are affiliated.

Appendix 1 │ Evolutionary pathway of CKD/ESKD integrated care in Taiwan

BNHI, Bureau of National Health Insurance; CKD, chronic kidney disease; DOH, Department of Health; eGFR, estimated glomerular filtration rate; ERA-EDTA, European Renal Association – European Dialysis and Transplant Association; ESKD, end-stage kidney disease; NBHP, National Bureau of Health Promotion; NGO, nongovernmental organization; NHI, National Health Insurance; PD, peritoneal dialysis; TSN, Taiwan Society of Nephrology; USRDS, United States Renal Data System.

Appendix 2 │ Work-up checklist for living donor kidney donation in Ghana