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

  • Kidney International Supplements 10(1):e24-e48
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Valerie A Luyckx at Brigham and Women's Hospital UNiversty of Zurich University of Cape Town

  • Brigham and Women's Hospital UNiversty of Zurich University of Cape Town

Masaomi Nangaku at The University of Tokyo

  • The University of Tokyo

Abstract and Figures

| 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

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Clinical pearls, case study: man with type 2 diabetes and stage 1 kidney disease on atkins-like diet.

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Deborah Thomas-Dobersen , Lynn Casey; Case Study: Man With Type 2 Diabetes and Stage 1 Kidney Disease on Atkins-Like Diet. Clin Diabetes 1 January 2005; 23 (1): 46–48. https://doi.org/10.2337/diaclin.23.1.46

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C.S. is a 45-year-old Hispanic man with a 10-year history of type 2 diabetes. He has a glycated hemoglobin of 7.0% and a blood pressure of 130/80 mmHg, treated with an angiotensin-converting enzyme inhibitor for the past 2 years. He has stable background retinopathy and is a nonsmoker. His BMI has been 30 (height 5′10″, weight 210 lb) for the past year. However,lately, he has put himself on the latest high-protein diet (i.e., the Atkins diet).

His weight has dropped by 10 lb, his fasting serum triglyceride level has fallen from 185 to 130 mg/dl, and his blood pressure has decreased to 120/78 mmHg. His LDL cholesterol has remained stable at 102 mg/dl on a statin. His serum creatinine is 0.9 mg/dl, and his 24-hour urine shows a significant increase in microalbumuria from 100 mg/24 hours last year to the current 200 mg/24 hours. He has stage 1 chronic kidney disease indicating kidney damage,with a normal glomerular filtration rate (GFR) of 98 ml/min/1.73 m 2 .

Would the weight reduction, blood pressure, and lipid-lowering accomplished by this high-protein, low-carbohydrate diet be an acceptable choice for a patient who is at significant risk of cardiovascular disease?

What are the recommendations of the American Heart Association (AHA), the National Kidney Foundation (NKF), the National Academy of Sciences, and the American Diabetes Association (ADA) regarding this type of diet for diabetes and/or weight loss?

What has research revealed about appropriate levels of macronutrients for patients such as C.S.?

It is likely that microalbuminuria is the start of a continuum progressing to macroalbuminuria and proteinuria. Microalbuminuria predicts renal disease in diabetes (both type 1 and type 2) and relates to premature mortality. Microalbuminuria is also a marker for pronounced diabetic vascular disease(endothelial dysfunction and chronic low-grade inflammation). Abnormal albuminuria is a major risk factor for cardiovascular complications,predicting increased cardiovascular morbidity and mortality. 1  

Twenty to thirty percent of patients with type 2 diabetes develop evidence of nephropathy. Some patients already have microalbuminuria or overt nephropathy upon diagnosis. Without intervention, 20-40% of those with microalbuminuria progress to overt nephropathy. For those on the continuum from overt nephropathy to end-stage renal disease (ESRD), the greater risk of death from coronary artery disease (CAD) may intervene. 2  

The average adult protein intake in the United States is 15-20% of total calories and has remained consistent from 1909 to the present. 3   Most Americans eat 50% more protein than they need. The Recommended Dietary Allowance (RDA) is 0.8 g of good quality protein per kilogram body weight per day for men and women. The high-protein Atkins and Zone diets recommend 125 g/day (36% kcal from protein) and 127 gm/day (34% kcal from protein),respectively. 4   The initial phases of the South Beach diet are similar, but no specific nutrient intake can be found in the diet's literature. In C.S., the Atkins diet would contribute 1.3 g protein/kg body weight and 36% of total daily calories from protein. Thus, high-protein diets promote a significantly abnormally high protein intake.

There is some evidence that a sustained high-protein diet can adversely affect renal function, especially in people with diabetes with or without mild renal insufficiency. In patients without renal insufficiency, a high-protein diet may act by acutely increasing the GFR and causing intraglomerular hypertension, which may cause progressive loss of renal function. In the Nurses Health Study, 1,624 female nurses between 30 and 55 years of age were followed for a period of > 11 years. The highest quartile of total protein intake, an average of 93 g/day, was significantly associated with a decline in GFR in women with mild renal insufficiency, thus worsening renal disease. 5   Previous studies had shown mixed results of high-protein diets on renal function but had limitations such as small patient numbers, limited follow-up, and a narrow range of protein intake.

Looking at this relationship from another angle, a meta-analysis recently showed that protein restriction retards the rate of decline in GFR, thus lessening kidney damage. The resulting decrease in kidney damage was small and not impressive. However, when studies looking at people with diabetes were combined, a total of 102 patients given a mean protein restriction of 0.7 g/kg/day versus a control group given 1 g/kg/day (a narrow range), showed a more impressive improvement in renal function independent of the original renal function over 22 months. 6   A crosssectional study of > 2,600 people with type 1 diabetes found that a protein intake > 20% of calories was associated with an increased urinary albumin excretion rate. Researchers concluded that people with diabetes should not exceed a protein intake of 20% of calories. 7   Any study in type 1 diabetes is applicable to type 2 diabetes as it relates to nephropathy. Therefore, there is evidence to recommend avoidance of high protein intakes in patients at risk for renal disease, i.e. all patients with type 1 or type 2 diabetes.

Nutrient analysis of high-protein diets is a concern. With some high-protein diets, such as Atkins, come carbohydrate restrictions. Yet high-carbohydrate foods, such as fruits, vegetables, and low-fat dairy products, provide potassium, magnesium, and calcium, which modestly reduce blood pressure. 8   Normal blood pressure is critically important in preventing CAD and microalbuminuria. With high-protein diets and carbohydrate restrictions come decreased-fiber diets. High-fiber diets have many beneficial effects,including weight loss and lower cardiovascular and cancer risks. With high-protein diets come higher intakes of saturated fats, which are potentially atherogenic. 9   In addition, experimental evidence indicates that a high-protein diet and the resultant increase in saturated fat intake may accelerate the progression of renal disease. Increased LDL cholesterol can stimulate mesangial hypertrophy and stimulate cytokine formation, which may ultimately cause tissue injury. In both type 1 and type 2 diabetes, hypercholesterolemia is a predictor of deteriorating kidney function. 10  

The RDA for carbohydrate is set at 130 g carbohydrate/day for adults and children based on the average minimum amount of glucose utilized by the brain to ensure optimal brain function. 11   That pretty much omits Atkins (28-33 g/day) and the early phases of the South Beach diet. Recent AHA guidelines discourage high-protein diets for weight loss,citing potential increased risk for coronary heart disease and renal disease. 12   The most recent ADA technical review on nutrition states that high-protein diets are not recommended until further research establishes their safety. 3   Concerns include renal function and cardiovascular disease. The NKF states in its Kidney Disease Outcomes Quality Initiative guidelines for chronic kidney disease that there is no benefit from a protein intake higher than the RDA of 0.8 g/kg body weight and that this is a reasonable level to recommend for patients with chronic kidney disease in stages 1-3. 13   Thus, many respected nonprofit health care organizations discourage the use of high-protein, low-carbohydrate diets.

Literature reviews of research on the effect of high-protein,low-carbohydrate diets on obesity and lipid levels are not convincing. A review of the literature describing adult outpatient recipients of low-carbohydrate, high-protein diets compared a wide variety of study designs,carbohydrate levels, durations, and calorie levels. Only five studies evaluated low-carbohydrate, high-protein diets for > 90 days, and these were nonrandomized, uncontrolled studies. The three variables that most predicted weight loss were calorie level, duration of calorie restriction, and number of very obese participants in the study. Reduced carbohydrate content was not significantly associated with weight loss. 14  

Another review concluded that populations at risk for renal disease, such as patients with diabetes, should avoid high-protein diets. The authors also caution that evidence suggested that protein intakes in excess of two to three times the RDA may have harmful effects on calcium homeostasis and possibly bone mass, 15   a problem for a population already predisposed to osteoporosis. In addition, a comparison of high-protein, low-carbohydrate diets versus a low-fat diet for weight loss shows them equally effective after 1 year in duration. 16   A recent small, randomized, clinical trial comparing a low-carbohydrate (< 30 g) to a conventional low-fat diet in severely obese patients, including individuals with diabetes, showed no significant difference in weight loss after 1 year, although weight loss was minimal (11 vs. 7 lb). Of interest was that the weight loss on the low-carbohydrate diet did not appear to be sustainable and that blood urea nitrogen levels increased more in the low-carbohydrate group. 17  

Reduced energy intake is an important therapeutic objective for the patient in the case described above. Reduced energy intake would reduce his blood pressure and serum lipids as well as improve his glycemic control. Weight loss was effective in lowering his blood pressure and serum triglycerides, as one would expect. However, the macronutrient content of his diet may have exacerbated the microalbuminuria. Therefore, a patient such as C.S. would be illadvised to stay on the high-protein diet because of the potential risk to his kidney function as shown by his elevated microalbuminuria.

With guidance from a registered dietitian, C.S. started a 1,500-kcal,low-fat diet with a walking program of 2 miles/day, 6 days/week. He was very tired of the restrictive nature of the high-protein diet and welcomed a change. His urine microalbumin level fell to < 50 mg/24 hours.

Two important studies show strategies that work to yield long-term weight loss. In order to determine what strategies work for long-term weight loss,the National Weight Control Registry elicited and studied information from> 800 people who have been successful in this endeavor. Only half had lost weight through weight loss programs. The remainder had lost weight without medical intervention. Keys to success were an average calorie intake of ∼1,400 kcal/day, a low-fat diet (24% of kcal), and a high energy expenditure through exercise (2,800 kcal/week). 18   The Diabetes Prevention Program also documented that a low-fat diet, increased physical activity, and educational sessions with frequent follow-up allowed participants to lose 7% of their body weight and maintain a 5% weight loss for 3 years. 19  

High protein intakes cause higher workloads for kidneys, whose function is to handle amino acid fragments during protein degradation and excrete nitrogen as urea.

There is no research documenting that a high-protein diet maintains weight reduction any better than a low-fat diet, which is safer and offers long-term results.

Safety and efficacy of high-protein, low-carbohydrate diets are a concern for patients with diabetes, regardless of documented kidney disease.

Additional Information

Concerns about the low-carbohydrate diet craze of 11 leading nonprofit consumer, nutrition, and public health organizations are discussed in a format appropriate for both health professionals and patients at the Partnership for Essential Nutrition website: www.essentialnutrition.org .

Deborah Thomas-Dobersen, RD, MS, CDE, is a diabetes educator at the Center for Diabetes and Endocrinology in Arvada, Colo. Lynn Casey, RD, CSR, is a renal dietitian at Renal Care Group, Inc., in Denver, Colo.

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  • Introduction
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Themes are shown in tan and subthemes in light gray. The arrows show how the subthemes relate to the themes and how certain themes relate to each other. CKD indicates chronic kidney disease.

eAppendix 1. Patients’ Interview Guide

eAppendix 2. Nephrologists’ Interview Guide

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Adoli LK , Campeon A , Chatelet V, et al. Experience of Chronic Kidney Disease and Perceptions of Transplantation by Sex. JAMA Netw Open. 2024;7(7):e2424993. doi:10.1001/jamanetworkopen.2024.24993

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Experience of Chronic Kidney Disease and Perceptions of Transplantation by Sex

  • 1 Univ Rennes, EHESP, CNRS, INSERM, Arènes – UMR 6051, RSMS – U1309, Rennes, France
  • 2 Arènes–UMR 6051, ISSAV, EHESP, CNRS, Rennes, France
  • 3 U1086 INSERM, Anticipe, Centre De Lutte Contre Le Cancer François Baclesse, Centre Universitaire Des Maladies Rénales, Caen, France
  • 4 Renal Epidemiology and Information Network (REIN) Registry, Biomedecine Agency, Saint-Denis-La-Plaine, France
  • 5 Inserm U1149 Université Paris Cité Assistance Publique-Hôpitaux De Paris Service De Néphrologie Hôpital Bichat- Paris, Paris, France
  • 6 Univ Rennes, CHU Rennes, INSERM, EHESP, IRSET (Institut de Recherche en Santé, Environnement et Travail) – UMR_S 1085, Rennes, France
  • 7 Unité de Biostatistique, Hôpital Necker-Enfants Malades, AP-HP; Institut Imagine; Université Paris-Cité, Paris, France

Question   How do patients receiving dialysis experience chronic kidney disease and perceive kidney transplantation?

Findings   This qualitative study of 99 patients with chronic kidney disease and 45 nephrologists found a dual perception of kidney transplantation: positive because it will put an end to chronic restrictions and negative because it involves uncertainties. Some responses from women and nephrologists indicated that women’s perceptions and experiences were different than men’s.

Meaning   These results suggest that actions on patients’ dialysis experience should be made to improve access to kidney transplantation.

Importance   The pathway to kidney transplantation (KT) begins with the patient’s acceptance of this surgical procedure after discussion with the nephrologist. The patients’ perceptions of the disease and of KT may influence their willingness to undergo transplantation.

Objective   To describe patients’ experiences of kidney disease and their perceptions of KT and the nephrologists’ perceptions of the patient experience.

Design, Setting, and Participants   This qualitative study collected data through semistructured interviews with patients with chronic kidney disease and nephrologists in the Bretagne, Île-de-France and Normandie regions, France. Researchers involved in the study in each region purposely selected 99 patients with chronic kidney disease who initiated dialysis in 2021, based on their age, sex, dialysis facility ownership, and also 45 nephrologists, based on their sex and years of experience. Data analysis was performed from January to October 2023.

Main Outcomes and Measures   Themes were identified using inductive thematic analysis. Specific characteristics of men and women as well as the nephrologist’s views for each theme were described.

Results   This study included 42 men and 57 women (56 [57%] aged 60 years or older) who started dialysis in 2021 and 45 nephrologists (23 women and 22 men). Six major themes were identified: (1) burden of chronic kidney disease on patients and their families, (2) health care professional–patient relationship and other factors that modulate chronic kidney disease acceptance, (3) dialysis perceived as a restrictive treatment, (4) patients’ representation of the kidney graft, (5) role of past experiences in KT perception, and (6) dualistic perception of KT. In some cases, women and nephrologists indicated that women’s perceptions and experiences were different than men’s; for example, the disease’s psychological impact and the living donor KT refusal were mainly reported by 8 women.

Conclusions and Relevance   Patients’ past experience of chronic kidney disease in general and of KT in particular, as well as their relationship with their family and nephrologist, were substantial determinants of KT perception in this qualitative study. Targeted policies on these different factors might help to improve access to KT, and more research is needed to understand whether there are sex-based disparities.

For eligible patients, kidney transplantation (KT) is the best kidney replacement therapy to improve symptoms and quality of life. 1 - 3 However, in many countries, access to KT is a serious issue due to the limited availability of grafts and the high demand. 4

Previous studies in France and abroad reported the existence of disparities in the access to KT. 5 - 7 These disparities may be associated with socioeconomic level, ethnicity, the practice of nephrologists, or with sex and/or gender. 8 - 14 Some authors concluded that women refuse transplantation much more than men, whereas they are more likely to be living donors. 15 , 16 Patients’ preferences could play an important role in the explanation of these disparities. 15 , 17 Hence, it is valuable to understand how these disparities arise and to identify factors on which action could be focused to improve access to KT. In France, according to the Haute Autorité de la Santé (HAS) recommendations, entry into the KT process starts with the proposal by the nephrologist and a discussion with the patient. 18 After accepting to start the process, the patient will undergo medical tests and see different health care professionals who will confirm the absence of contraindications.

Understanding the patients’ experiences and perceptions of KT will help to address disparities and to adapt policies on KT. Therefore, this study was designed to address the following question: how do patients on dialysis experience chronic kidney disease (CKD) and perceive KT?

This qualitative study was part of a larger project which aimed to understand sex-based and/or gender-based disparities of access to KT in France. 19 This study and the data collection were authorized by the French National School of Public Health data protection officer. All patients and nephrologists read an information letter and gave their informed oral consent prior to the interviews.

A descriptive qualitative study was performed based on interviews with patients and nephrologists. 20 , 21 This study was guided by a phenomenological approach and focused on the experience of CKD as perceived by patients and nephrologists. 22 , 23 The terms “man/men” and “woman/women” used in this work refer to the biological sex. 24

Participants were recruited from 3 French regions: Bretagne, Normandie, and Île-de-France. Without seeking exhaustiveness, these regions have different profiles concerning KT access and were chosen to ensure heterogeneity. 25 - 27

L.K.A. (MD, MSc, man, with experience in quantitative and qualitative studies), S.B. (MD, PhD, woman, with experience in quantitative and qualitative studies) and the researchers involved in the study in each region purposely selected 99 patients with CKD who initiated dialysis in 2021, based on their age, sex, dialysis facility ownership, and also 45 nephrologists, based on their sex and years of experience. Patients with absolute contraindication to KT according to the HAS recommendations (age >85 years, active malignant neoplasm, body mass index [calculated as weight in kilograms divided by height in meters squared] >50, oxygen-dependent) were not included. 18

Data were collected using semistructured interviews. F.K. and S.D. (MPH, woman, experts in qualitative and quantitative studies), A.A. (MPH, man, expert in quantitative and qualitative studies) and L.K.A. performed the interviews. They were not involved in the patients’ care and underwent training to homogenize practices before starting the interviews. In collaboration with A.C. (PhD, man, senior researcher in qualitative studies), L.K.A. elaborated a patient and nephrologist interview guide that was pretested with patients and nephrologists. This guide listed the themes covered during the interviews using open-ended questions. These themes were identified from the literature 28 - 32 and based on the experience of the researchers involved in this study (eAppendix 1 and eAppendix 2 in Supplement 1 ). The interviews were carried out face-to-face, in French, at the hospital during a dialysis session (with preservation of confidentiality) or at the patient’s home in a quiet place. All interviews were recorded on a dictaphone. Field notes were made during interviews.

The interviewers or a transcription agency transcribed the interviews. The Nvivo software (version 1.7.1, QSR International) 33 was used to code the data. L.K.A. and S.B. independently coded the data using an inductive broad-based approach. Then, a thematic analysis was used to group codes into common themes. The interviews of patients and nephrologists were analyzed together. First, each theme was identified and then the specific characteristics of men and women as well as the nephrologist’s views for each theme were pointed out. A.C. reviewed independently the data and the codes to contribute to the analysis. This study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) framework to ensure that the important aspects of this study were reported. 34 Saturation was reached when the analysis did not bring any new additional theme. 35 However, interviews were continued and all interviews were analyzed to ensure that no new element would emerge. Five patients received their interview transcript to confirm it. The results of the analysis were presented to 2 patients and 5 nephrologists to obtain their feedback. They did not suggest any change in the quotes. Ten patients refused to take part in this study for various reasons.

For this study, 99 patients (57 women, 42 men, and 56 [57%] aged 60 years or older) and 45 nephrologists (23 women and 22 men) were interviewed ( Table 1 ). Interviews lasted approximately 45 minutes.

The thematic analysis of the interviews identified 6 main themes: (1) burden of chronic kidney disease on patients and their families, (2) health care professional-patient relationship and other factors that modulate CKD acceptance, (3) dialysis perceived as a restrictive treatment, (4) patients’ representation of the kidney graft, (5) role of past experiences in KT perception, and (6) dualistic perception of KT. Table 2 lists selected illustrative quotations to support each theme and the Figure presents a graphical synthesis of the analysis results.

Patients mentioned the difficulty of living with CKD. CKD was seen as an all-encompassing disease that affected all aspects of the patient’s life (professional, social, personal). Patients stressed the daily fatigue that prevented them from feeling fulfilled. A patient elaborated, “we’re tired all the time” (patient 1, more than 60 years of age, woman). Whatever the patient’s age, the fatigue onset marked the first turning point in the normal course of their life. However, despite all efforts and determination to maintain a life as normal as possible, at some point, the feeling of exhaustion disrupted the patient’s daily routine, from going to work and carrying out professional activities, to more ordinary activities, such as going for a walk, taking part in leisure activities, or even feeling autonomous in the most basic activities of daily living. These limitations and the impossibility of overcoming this fatigue could affect the patients’ self-esteem and mental health. Patients felt that they were not functioning as well as they used to, that their body mechanics had broken down. This feeling was reported frequently by women. A nephrologist elaborated “men find it harder to express their fears than women” (nephrologist 4, man) and “I have the impression that men are more stressed than women, but I’m not sure” (nephrologist 5, man).

CKD also affected the patient’s family and close circle of friends. The emotional bond between parent and child, patient and employer, patient and friend, and the couple relationship were especially affected. The impact on the family was positive for several patients, in terms of strengthening the existing relationships or creating new ones. However, some patients experienced difficulties in their relationships with others. A woman younger than 60 years elaborated, “… in fact, because of this, my husband left me [laughs]. When the dialysis was approaching, he told me he’d had enough of living with a patient and that was that” (patient 30). Two women reported the impact on their partner and on their married life. CKD did not allow them to play their full role in the couple, particularly in caring for their partner or contributing to the couple’s sexual fulfilment.

CKD progression and the care pathway of the patients with CKD involve several health care professionals who enter and leave the care pathway at different times. Not surprisingly, several patients said that the quality of the health care professional–patient relationship was very good and was important for their disease management. A patient shared, “… Yes, and the staff members are really nice” (patient 31, more than 60 years of age, man). A good relationship with the staff provided comfort, reassurance and even greater acceptance of the disease and dialysis. A good relationship included a warm welcome, a good explanation of the disease and treatment, a willingness to answer questions, moral and emotional support, and greater patient involvement in decision-making.

Similarly, the dialysis center gradually became more familiar, and was seen less as a place of care and more as a place where they spent a lot of time and where they developed new points of reference. Therapeutic education sessions were also mentioned and helped to establish this close relationship.

The health care professional-patient relationship is very important for CKD management. However, this relationship was not always easy for some patients who reported difficulties in communicating with their health care professionals. Some women, reported difficult relationships with their doctors/nephrologists who had a very hierarchical and overbearing behavior toward them. A patient elaborated: “And they’re... we go to hospital, they’re not friendly, they’re unpleasant” (patient 32, more than 60 years of age, woman). This situation, far from being trivial, often led to a deterioration of self-perception in patients who would have needed support. This aspect was not raised by the nephrologists who thought that “men are more likely to disagree and to want to force...” (nephrologist 1, man).

Close friends and family played an important role in coping with CKD. Indeed, being surrounded by people who understood the disease and were willing to help improved the patients’ comfort and psychological state, and also enabled them to draw on their resources to remain independent. A nephrologist thought that women were much braver and were “less likely to be accompanied by their husbands” (nephrologist 11, woman).

Belonging to a religious faith was an important factor cited by patients as making it easier for them to accept their disease. Illness was seen by them as a divine decision, and faith allowed them to free themselves from the fear of the disease and its consequences. This point was raised by 2 women. Faith gave them a safe space to retreat to and facilitated the acceptance of difficulties and suffering.

Starting dialysis is an important stage in the patient’s life. Initially, it was perceived as a restrictive factor, making a break in the patients’ normal life because their survival now depended on a machine, unlike the previously enjoyed freedom and autonomy. However, this perception was not shared by all patients, especially when transition to dialysis had been planned for a long time. For these patients, there had been a gradual learning process: they had time to prepare themselves mentally for this treatment modality and to accept it as a necessary constraint to improve their health.

Once treatment had begun, dialysis benefits were clearly seen, and patients testified that it improved their health and more generally, their quality of life. Accepting dialysis helped to give a new meaning to life, allowing patients to regain a sense of self-confidence in their body, and to resume activities they could no longer do. This positive view of dialysis was more pronounced in patients who experienced very disabling symptoms before dialysis initiation.

The patients’ perceptions of the graft varied. For some, the kidney graft was seen as a gift, a very expensive present that would allow them to have a normal life again. At times, the precious nature of the graft gave rise to a feeling of indebtedness and a promise to take care of it.

However, the kidney graft was not always well accepted. For some patients, it was a foreign object that alters their body equilibrium and that they were not ready to accept. A man patient shared “But a transplant, for me no matter what, is a foreign element” (patient 13, more than 60 years of age, man).

Overall, the interviewed patients were in favor of receiving a kidney from a deceased donor; conversely, receiving a kidney from a living donor posed an ethical dilemma that led some patients to refuse it. It seemed difficult not to feel guilty about a possible future deterioration in the donor’s health. This feeling was reported by 8 women.

For patients who were prepared to accept a kidney from a living person, the relationship with the donor was another issue that needed to be tackled. For example, receiving a kidney from one’s child was completely impossible. Indeed, a nephrologist explained that it was more complicated for a mother to receive a kidney from her child, whereas this was not always the case for a father.

A living-donor transplant remained an option to be pursued for some patients. However, this brought new challenges. The first was to find a relative who was willing to donate a kidney, and the second was to ensure that the donor was compatible. Some patients reported difficulties in finding a donor. Poor relationships with family and friends, or lack of understanding by family and friends were all barriers to living-donor transplant. Moreover, some patients said that it was not up to them to ask for a kidney, but that those around them should spontaneously suggest this donation.

When dialysis was going well, and the patient’s health improved, interest in KT was not high. Patients found a certain balance on dialysis and were more concerned about the KT risks and its impact on their health. A patient elaborated: “... I’m stabilizing my life like this. And then, maybe, I’ll want something else. But today, my life like this suits me just fine” (patient 8, less than 60 years of age, woman). This is a patient with a good experience about dialysis and who has the support of her partner and family. Conversely, patients who experienced difficulties with dialysis saw KT as a goal, a redeeming feature, something to help return to normal life.

It was common to ask people who underwent KT what to expect, and whether they felt reassured by their decision. This feedback could be positive, which reassured the patient, or negative, which raised new questions, without dissuading them.

The patients’ perceptions of KT were a key factor in determining its acceptance. On the one hand, patients viewed KT as an opportunity to resume a normal life; on the other, fear or mistrust were given as reasons to refuse surgery.

KT was seen as a break from the difficult, restricted life of dialysis. Patients thought that KT would allow resuming activities, would reduce the dialysis burden. They also saw it as a source of hope for resuming “normal” life. KT was considered an important opportunity.

This vision of KT allowed patients to maintain a positive view of the future. This feeling was reinforced by the positive feedback from close friends and family and by their trust in medicine and health care professionals. However, this positive perception of KT was not shared by all interviewed patients, due to their specific journey.

Fear of surgery, uncertainty about the surgery side effects, and fear of the unknown when undergoing transplantation were factors likely to hinder KT acceptance. Some patients felt quite comfortable on dialysis and did not see the need to start a complex process with an uncertain outcome. For these patients, the sacrifice was not worth it, and they preferred to maintain their life balance without undergoing KT. Age could partly explain this lack of commitment to new treatments. Older patients were skeptical about KT. Moreover, some nephrologists thought that women deliberately postponed the start of their pre-KT workup due to fear of what may be found. However, not all nephrologists shared this view “I’ve had more men who were reluctant to have a transplant than women” (woman nephrologist). Women seemed to be as hesitant as men about KT.

The present study investigated what patients with CKD on dialysis thought about KT and how this perception was constructed. This is the first time, to our knowledge, that the question of KT perception has been studied using a qualitative approach and including a large number of patients and nephrologists. Themes included the burden of CKD on patients and their families, health care professional–patient relationship and other factors that modulate CKD acceptance, dialysis perceived as a restrictive treatment, patients’ representation of the kidney graft, role of past experiences in KT perception, and dualistic perception of KT. Our findings suggest there are sex-specific differences in how men and women experience CKD and KT. The feeling of being stripped of their self, the impact of the disease on marital relationships, the difficult relationship with health care professionals, the role of religion in managing the disease, and the refusal of living-donor transplant were reported by a few women patients. Men patients perceived the kidney graft as a foreign object. Some nephrologists thought that women talked frequently about the impact of the disease, whereas men appeared to be much more stressed.

Almost all patients reported the burden of kidney failure. Patients mentioned fatigue as the first symptom, in line with previous studies. 36 , 37 Several patients, particularly women, also mentioned the psychological burden of the disease. Past studies reported that women tend to have much more severe symptoms than men and also experience a higher psychological burden. 38 , 39 Dialysis onset is the other key stage in CKD management. It is a turning point in the patients’ lives. This study highlighted that patients who have spent a long time monitoring their disease before starting dialysis cope better with it than those who started it as an emergency. This underlines the need for early management before the start of dialysis, with good coordination between the general practitioner and the nephrologist, but also with the involvement of other specialists such as psychologists. 40

The nature of the health care professional-patient relationship also influenced the disease management. The quality of this relationship is very important, as stated by several patients. It involves listening to the patients, answering to their questions and providing the necessary information. In a previous study in a dialysis center, most patients said that the therapeutic nurse–patient relationship was important in kidney replacement therapy because it gave them the sense to be understood and the strength to fight the disease. 41 This also implies the patients’ involvement in the decision-making process. 42 , 43

Concerning the patients’ perception of KT, it emerged that not all patients perceived KT in the same way. Previous experiences with KT, personal or by a close relative, as well as the risks associated with surgery were some obstacles to KT acceptance identified in our study. The same reasons, including dying after general anesthesia or needing additional surgical interventions, were identified by a narrative review of qualitative studies on access to KT. 44

For living-donor transplants, the relation with the donor and the graft representation were the main barriers reported. Unlike the present work, a study carried out in the USA on patients’ perceptions of KT showed that living-donor KT was preferred and that the financial burden was an obstacle to KT acceptance. 45 One explanation for these differences might be that CKD treatment is fully reimbursed by the social security in France.

Most of the identified themes were shared by men and women; however, we have identified a number of points that could suggest that there are differences between men and women. CKD impact on the psychological well-being and on marital relationships was mentioned mainly by women, possibly because women tend to have a worse estimated psychosocial health than men. 46 We also showed that few women did not want a graft from a living donor, especially when the donor was their child. This refusal was due to different reasons, including not wanting to be the cause of any future deterioration in the donor’s health, and finding this act selfish, especially given the KT uncertain outcome. This is in line with a previous finding that women are less willing to undergo KT compared with men. 15 , 47 , 48 However, some men also refused KT, particularly due to advanced age and the perception of the graft as a foreign element. More studies are needed to confirm these disparities.

This study has limitations. Interviews were carried out by different interviewers. Although they were trained and used the same interview guide, some residual subjectivity inherent to each interviewer remained. Moreover, the effect of the nephrologists’ sex on their reported perceptions was not investigated although it may have influenced their answers. Additionally, this study was carried out in French and then, results and quotes were translated into English. Although the translation was carried out by a specialized translation agency, the meaning of some words and phrases may differ slightly from the French version.

This qualitative study described the patients’ perceptions and experiences of KT and identified a number of points that could suggest that there are differences between men and women, which could help explain women’s lower access to KT in France. The sex-based differences observed need to be further investigated using a systematic gender analysis.

Accepted for Publication: June 3, 2024.

Published: July 31, 2024. doi:10.1001/jamanetworkopen.2024.24993

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2024 Adoli LK et al. JAMA Network Open .

Corresponding Author: Latame Komla Adoli, MD, MSc, Univ Rennes, EHESP, CNRS, INSERM, Arènes – UMR 6051, RSMS – U1309 – F-35000 Rennes, France; 15 Avenue du Professeur Léon Bernard, 35000 Rennes, France ( [email protected] ).

Author Contributions: Drs Adoli and Bayat-Makoei had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Adoli, Vigneau, Bayat-Makoei.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Adoli, Campéon, Bayat-Makoei.

Critical review of the manuscript for important intellectual content: All authors.

Statistical analysis: Adoli, Couchoud, Vabret.

Obtained funding: Campéon, Vigneau, Bayat-Makoei.

Administrative, technical, or material support: Adoli, Chatelet, Jais, Bayat-Makoei.

Supervision: Adoli, Campéon, Vigneau, Jais, Bayat-Makoei.

Conflict of Interest Disclosures: Dr Daugas reported grants from Assistance Publique - Hôpitaux de Paris during the conduct of the study; nonfinancial support from GSK, nonfinancial support from Astra Zeneca, personal fees from Amgen, nonfinancial support from Otsuka, personal fees from Novartis, and nonfinancial support from Alexion outside the submitted work. No other disclosures were reported.

Funding/Support: This research was funded in whole by the French National Research Agency (ANR-20-CE36-0002-01).

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Data Sharing Statement: See Supplement 2 .

Additional Contributions: The authors thank Elisabetta Andermarcher, MD, PhD, for English revision. We thank all the patients, nephrologists and all the research assistants involved in this study. They were not compensated.

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Chronic kidney disease in type 2 diabetes: The size of the problem, addressing residual renal risk and what we have learned from the CREDENCE trial

Affiliations.

  • 1 Department of Diabetes and Endocrinology, Guy's and St Thomas' NHS Foundation Trust, London, UK.
  • 2 School of Cardiovascular, Metabolic Medicine and Sciences, King's College London, London, UK.
  • PMID: 39044385
  • DOI: 10.1111/dom.15765

Chronic kidney disease (CKD) associated with type 2 diabetes (T2DM) is a global challenge; progression to end-stage kidney disease (ESKD) and increased risk of cardiovascular disease (CVD) associated with advancing nephropathy are a significant source of morbidity, mortality, and healthcare expenditure. Until recently, renin-angiotensin system (RAS) blockade was the mainstay of pharmacotherapy in diabetic kidney disease (DKD), representing a therapeutic paradigm shift towards interventions that delay disease progression independently of antihypertensive effects. However, a significant residual risk of DKD progression persisted in patients established on RAS blockade, highlighting the need for additional treatment options. Sodium-glucose cotransporter-2 (SGLT2) inhibitors, originally licensed as glucose-lowering agents in people with T2DM, serendipitously demonstrated beneficial renal and cardiovascular outcomes in clinical trials designed primarily to evaluate their cardiovascular safety. The Canagliflozin and Renal Events in Diabetes with Established Nephropathy Clinical Evaluation (CREDENCE) trial was the first to study the effect of SGLT2 inhibition on a primary composite renal endpoint of ESKD, doubling of serum creatinine, or renal or cardiovascular death in 4401 people with T2DM and CKD established on RAS blockade. The trial was stopped early due to efficacy, demonstrating a 30% relative risk reduction in the primary endpoint in the canagliflozin group (hazard ratio 0.70, 95% confidence interval 0.59-0.82; p = 0.00001). Through discussion of the primary analysis from CREDENCE, and selected post hoc analyses, we review the significant benefits highlighted by this landmark study, its role in shaping clinical guidelines, and in re-establishing interest in interventions that reduce the residual risk of progression of DKD, alongside its interrelation with cardiovascular morbidity and heart failure. We also provide a brief narrative summary of key renal outcome trials since CREDENCE, which indicate emerging avenues for pharmacotherapy beyond SGLT2 inhibition.

© 2024 The Author(s). Diabetes, Obesity and Metabolism published by John Wiley & Sons Ltd.

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  • UKKA. Kidney Disease: A UK Public Health Emergency. 2023.
  • Deng Y, Li N, Wu Y, et al. Global, regional, and National Burden of diabetes‐related chronic kidney disease from 1990 to 2019. Front Endocrinol (Lausanne). 2021;12:672350.
  • Thomas S, Karalliedde J. Diabetic kidney disease. Medicine. 2022;50(11):704‐710.
  • Karalliedde J, Viberti G. Proteinuria in diabetes: bystander or pathway to cardiorenal disease? J Am Soc Nephrol. 2010;21(12):2020‐2027.
  • Schefold JC, Filippatos G, Hasenfuss G, Anker SD, von Haehling S. Heart failure and kidney dysfunction: epidemiology, mechanisms and management. Nat Rev Nephrol. 2016;12(10):610‐623.

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  • Open access
  • Published: 10 January 2022

Chronic kidney disease and its health-related factors: a case-control study

  • Mousa Ghelichi-Ghojogh 1 ,
  • Mohammad Fararouei 2 ,
  • Mozhgan Seif 3 &
  • Maryam Pakfetrat 4  

BMC Nephrology volume  23 , Article number:  24 ( 2022 ) Cite this article

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Chronic kidney disease (CKD) is a non-communicable disease that includes a range of different physiological disorders that are associated with abnormal renal function and progressive decline in glomerular filtration rate (GFR). This study aimed to investigate the associations of several behavioral and health-related factors with CKD in Iranian patients.

A hospital-based case-control study was conducted on 700 participants (350 cases and 350 controls). Logistic regression was applied to measure the association between the selected factors and CKD.

The mean age of cases and controls were 59.6 ± 12.4 and 58.9 ± 12.2 respectively ( p  = 0.827). The results of multiple logistic regression suggested that many factors including low birth weight (OR yes/no  = 4.07, 95%CI: 1.76–9.37, P  = 0.001), history of diabetes (OR yes/no  = 3.57, 95%CI: 2.36–5.40, P  = 0.001), history of kidney diseases (OR yes/no  = 3.35, 95%CI: 2.21–5.00, P  = 0.001) and history of chemotherapy (OR yes/no  = 2.18, 95%CI: 1.12–4.23, P  = 0.02) are associated with the risk of CKD.

Conclusions

The present study covered a large number of potential risk/ preventive factors altogether. The results highlighted the importance of collaborative monitoring of kidney function among patients with the above conditions.

Peer Review reports

Chronic kidney disease (CKD) is a non-communicable disease that includes a range of different physiological disorders that are associated with an abnormal renal function and progressive decline in glomerular filtration rate (GFR) [ 1 , 2 , 3 ]. Chronic kidney disease includes five stages of kidney damage, from mild kidney dysfunction to complete failure [ 4 ]. Generally, a person with stage 3 or 4 of CKD is considered as having moderate to severe kidney damage. Stage 3 is broken up into two levels of kidney damage: 3A) a level of GFR between 45 to 59 ml/min/1.73 m 2 , and 3B) a level of GFR between 30 and 44 ml/min/1.73 m 2 . In addition, GFR for stage 4 is 15–29 ml/min/1.73 m 2 [ 4 , 5 ]. It is reported that both the prevalence and burden of CKD are increasing worldwide, especially in developing countries [ 6 ]. The worldwide prevalence of CKD (all stages) is estimated to be between 8 to 16%, a figure that may indicate millions of deaths annually [ 7 ]. According to a meta-analysis, the prevalence of stage 3 to 5 CKD in South Africa, Senegal, and Congo is about 7.6%. In China, Taiwan, and Mongolia the rate of CKD is about 10.06% and in Japan, South Korea, and Oceania the rate is about 11.73%. In Europe the prevalence of CKD is about 11.86% [ 8 ], and finally, about 14.44% in the United States and Canada. The prevalence of CKD is estimated to be about 11.68% among the Iranian adult population and about 2.9% of Iranian women and 1.3% of Iranian men are expected to develop CKD annually [ 9 ]. Patients with stages 3 or 4 CKD are at much higher risk of progressing to either end-stage renal disease (ESRD) or death even prior to the development of ESRD [ 10 , 11 ].

In general, a large number of risk factors including age, sex, family history of kidney disease, primary kidney disease, urinary tract infections, cardiovascular disease, diabetes mellitus, and nephrotoxins (non-steroidal anti-inflammatory drugs, antibiotics) are known as predisposing and initiating factors of CKD [ 12 , 13 , 14 ]. However, the existing studies are suffering from a small sample size of individuals with kidney disease, particularly those with ESRD [ 15 ].

Despite the fact that the prevalence of CKD in the world, including Iran, is increasing, the factors associated with CKD are explored very little. The present case-control study aimed to investigate the association of several behavioral and health-related factors with CKD in the Iranian population.

Materials and methods

In this study, participants were selected among individuals who were registered or were visiting Faghihi and Motahari hospitals (two largest referral centers in the South of Iran located in Shiraz (the capital of Fars province). Cases and controls were frequency-matched by sex and age. The GFR values were calculated using the CKD-EPI formula [ 16 , 17 ].

Data collection

An interview-administered questionnaire and the participant’s medical records were used to obtain the required data. The questionnaire and interview procedure were designed, evaluated, and revised by three experts via conducting a pilot study including 50 cases and 50 controls. The reliability of the questionnaire was measured using the test-retest method (Cronbach’s alpha was 0.75). The interview was conducted by a trained public health‌ nurse at the time of visiting the clinics.

Avoiding concurrent conditions that their association may interpreted as reverse causation; the questionnaire was designed to define factors preceding at least a year before experiencing CKD first symptoms. Accordingly participants reported their social and demographic characteristics (age, sex, marital status, educational level, place of residency), history of chronic diseases (diabetes, cardiovascular diseases, hypertension, kidney diseases, family history of kidney diseases, autoimmune diseases and thyroid diseases [ 18 ]). Also history of other conditions namely (smoking, urinary tract infection (UTI), surgery due to illness or accident, low birth weight, burns, kidney pain (flank pain), chemotherapy, taking drugs for weight loss or obesity, taking non-steroidal anti-inflammatory drugs, and taking antibiotic) before their current condition was started. Many researchers reported recalling birth weight to be reliable for research purposes [ 19 ]. Moreover, we asked the participants to report their birth weight as a categorical variable (< 2500 g or low, 2500- < 3500 g or normal, and > 3500 g or overweight). Medical records of the participants were used to confirm/complete the reported data. In the case of contradiction between the self-reported and recorded data, we used the recorded information for our study.

Verbal informed consent was obtained from patients because the majority of the participants were illiterate. The study protocol was reviewed and approved by the ethical committee of Shiraz University of Medical Sciences (approval number: 1399.865).

Sample size

The sample size was calculated to detect an association‌ between the history of using antibiotics (one of our main study variables) and CKD as small as OR = 1.5 [ 20 ]. With an alpha value of 0.05 (2-sided) and a power of 80%, the required sample size was estimated as large as n  = 312 participants for each group.

Selection of cases

The selected clinics deliver medical care to patients from the southern part of the country. In this study, patients with CKD who were registered with the above centers from June to December 2020 were studied. A case was a patient with a GFR < 60 (ml/min/1.73 m 2 ) at least twice in 3 months. According to the latest version of the International Classification of Diseases (2010), Codes N18.3 and N18.4 are assigned to patients who have (GFR = 30–59 (ml/min/1.73 m 2 ) and GFR = 15–29 (ml/min/1.73 m 2 ) respectively [ 21 ]. In total, 350 patients who were diagnosed with CKD by a nephrologist during the study period.

Selection of the controls

We used hospital controls to avoid recall-bias. The control participants were selected from patients who were admitted to the general surgery (due to hernia, appendicitis, intestinal obstruction, hemorrhoids, and varicose veins), and orthopedic wards‌ from June to December 2020. Using the level of creatinine in the participants’ serum samples, GFR was calculated and the individuals with normal GFR (ml/min/1.73 m 2 ) GFR > 60) and those who reported no history of CKD were included ( n  = 350).

Inclusion criteria

Patients were included if they were ≥ 20 years old and had a definitive diagnosis of CKD by a nephrologist.

Exclusion criteria

Participants were excluded if they were critically ill, had acute kidney injury, those undergone renal transplantation, and those with cognitive impairment.

Statistical analysis

The Chi-square test was used to measure the unadjusted associations between categorical variables and CKD. Multiple logistic regression was applied to measure the adjusted associations for the study variables and CKD. The backward variable selection strategy was used to include variables in the regression model. Odds ratios (ORs) and 95% confidence intervals (CIs) were calculated. All p -values were two-sided and the results were considered statistically significant at p  < 0.05. All analyses were conducted using Stata version 14.0 (Stata Corporation, College Station, TX, USA).

In total, 350 cases and 350 age and sex-matched controls were included in the analysis. The mean age of cases and controls were 59.6 ± 12.4 and 58.9 ± 12.2 respectively ( p  = 0.83). Overall, 208 patients (59.4%) and 200 controls (57.1%) were male ( p  = 0.54). Also, 149 patients (42.6%) and 133 controls (38.0%) were illiterate or had elementary education ( p  = 0.001). Most cases (96.9%) and controls (95.7%) were married ( p  = 0.42). The mean GFR for CKD and control groups were 38.6 ± 11.4 and 78.3 ± 10.2 (ml/min/1.73 m2) respectively.

Result of univariate analysis

Table  1 illustrates the unadjusted associations of demographic and health-related variables with CKD. Accordingly, significant (unadjusted) associations were found between the risk of CKD and several study variables including education, history of chronic diseases (diabetes, cardiovascular, hypertension, kidney diseases, autoimmune diseases, and hypothyroidism), family history of kidney diseases, smoking, UTI, surgery due to illness or accident, low birth weight, burns, kidney pain, chemotherapy, taking non-steroidal anti-inflammatory drugs, and taking antibiotics) ( P  < 0.05 for all).

Results of multivariable analysis

Table  2 illustrates the adjusted associations between the study variables and the risk of CKD. Most noticeably, low birth weight (OR yes/no  = 4.07, 95%CI: 1.76–9.37, P  = 0.001), history of surgery (OR yes/no  = 1.74, 95%CI: 1.18–2.54, P  = 0.004), family history of kidney diseases (OR yes/no  = 1.97, 95%CI: 1.20–3.23, P  = 0.007), and history of chemotherapy (OR yes/no  = 2.18, 95%CI: 1.12–4.23, P  = 0.02) were significantly associated with a higher risk of CKD. On the other hand, education (OR college/illiterate or primary  = 0.54, 95%CI: 0.31–0.92, P  = 0.025) was found to be inversely associated with CKD.

The results of the present study suggested that several variables including, education, history of diabetes, history of hypertension, history of kidney diseases or a family history of kidney diseases, history of surgery due to illness or accident, low birth weight, history of chemotherapy, history of taking non-steroidal anti-inflammatory drugs, and history of taking antibiotics may affect the risk of CKD.

In our study, the level of education was inversely associated with the risk of CKD. This finding is in accordance with the results of a study conducted by K Lambert et.al, who suggested that illiteracy or elementary education may raise the risk of CKD [ 22 ]. The fact that education level is associated with health literacy, may partly explain our results that lower education and inadequate health literacy in individuals with CKD is associated with worse health outcomes including poorer control of biochemical parameters, higher risk of cardiovascular diseases (CVDs); a higher rate of hospitalization, and a higher rate of infections [ 23 ].

In the current study, the history of diabetes was associated with a higher risk of CKD. This finding is consistent with the results of other studies on the same subject [ 20 , 21 , 24 , 25 , 26 , 27 ]. It is not surprising that people with diabetes have an increased risk of CKD as diabetes is an important detrimental factor for kidney functioning as approximately, 40% of patients with diabetes develop CKD [ 27 ].

The other variable that was associated with an increased risk of CKD was a history of hypertension. Our result is consistent with the results of several other studies [ 20 , 24 , 25 , 28 ]. It is reported that hypertension is both a cause and effect of CKD and accelerates the progression of the CKD to ESRD [ 29 ].

After controlling for other variables, a significant association was observed between family history of kidney diseases and risk of CKD. Published studies suggested the same pattern [ 24 ]. Inherited kidney diseases (IKDs) are considered as the foremost reasons for the initiation of CKD and are accounted for about 10–15% of kidney replacement therapies (KRT) in adults [ 30 ].

The importance of the history of surgery due to illness or accident in this study is rarely investigated by other researchers who reported the effect of surgery in patients with acute kidney injury (AKI), and major abdominal and cardiac surgeries [ 31 , 32 ] on the risk of CKD. Also, AKI is associated with an increased risk of CKD with progression in various clinical settings [ 33 , 34 , 35 ]. In a study by Mizota et.al, although most AKI cases recovered completely within 7 days after major abdominal surgery, they were at higher risk of 1-year mortality and chronic kidney disease compared to those without AKI [ 31 ].

The present study also showed that low birth weight is a significant risk factor for CKD. This finding is consistent with the results of some other studies. However, the results of very few studies on the association between birth weight and risk of CKD are controversial as some suggested a significant association [ 19 , 36 , 37 ] whereas others suggested otherwise [ 36 ]. This may be explained by the relatively smaller size and volume of kidneys in LBW infants compared to infants that are normally grown [ 38 ]. This can lead to long-term complications in adolescence and adulthood including hypertension, decreased glomerular filtration, albuminuria, and cardiovascular diseases. Eventually, these long-term complications can also cause CKD [ 39 ].

Another important result of the current study is the association between chemotherapy for treating cancers and the risk of CKD. According to a study on chemotherapy for testicular cancer by Inai et al., 1 year after chemotherapy 23% of the patients showed CKD [ 40 ]. Another study suggested that the prevalence of stage 3 CKD among patients with cancer was 12, and < 1% of patients had stage 4 CKD [ 41 , 42 ]. Other studies have shown an even higher prevalence of CKD among cancer patients. For instance, only 38.6% of patients with breast cancer, 38.9% of patients with lung cancer, 38.3% of patients with prostate cancer, 27.5% of patients with gynecologic cancer, and 27.2% of patients with colorectal cancer had a GFR ≥90 (ml/min/1.73 m 2 ) at the time of therapy initiation [ 43 , 44 ]. The overall prevalence of CKD ranges from 12 to 25% across many cancer patients [ 45 , 46 , 47 ]. These results clearly demonstrate that, when patients with cancer develop acute or chronic kidney disease, outcomes are inferior, and the promise of curative therapeutic regimens is lessened.

In our study, the history of taking nephrotoxic agents (antibiotics or NSAIDs drugs) was associated with a higher risk of CKD. Our result is following the results reported by other studies [ 48 , 49 ]. Common agents that are associated with AKI include NSAIDs are different drugs including antibiotics, iodinated contrast media, and chemotherapeutic drugs [ 50 ].

Strengths and limitations of our study

Our study used a reasonably large sample size. In addition, a considerably large number of study variables was included in the study. With a very high participation rate, trained nurses conducted the interviews with the case and control participants in the same setting. However, histories of exposures are prone to recall error (bias), a common issue in the case-control studies. It is to be mentioned that the method of selecting controls (hospital controls) should have reduced the risk of recall bias when reporting the required information. In addition, we used the participants’ medical records to complete/ confirm the reported data. Although the design of the present study was not able to confirm a causal association between the associated variables and CKD, the potential importance and modifiable nature of the associated factors makes the results potentially valuable and easily applicable in the prevention of CKD.

Given that, chemotherapy is an important risk factor for CKD, we suggest the imperative for collaborative care between oncologists and nephrologists in the early diagnosis and treatment of kidney diseases in patients with cancer. Training clinicians and patients are important to reduce the risk of nephrotoxicity. Electronic medical records can simultaneously be used to monitor prescription practices, responsiveness to alerts and prompts, the incidence of CKD, and detecting barriers to the effective implementation of preventive measures [ 51 ]. Routine follow-up and management of diabetic patients is also important for the prevention of CKD. We suggest a tight collaboration between endocrinologists and nephrologists to take care of diabetic patients with kidney problems. In addition, surgeons in major operations should refer patients, especially patients with AKI, to a nephrologist for proper care related to their kidney function. Treatment of hypertension is among the most important interventions to slow down the progression of CKD [ 12 ]. Moreover, all patients with newly diagnosed hypertension should be screened for CKD. We suggest all patients with diabetes have their GFR and urine albumin-to-creatinine ratio (UACR) checked annually. Finally, the aging population and obesity cause the absolute numbers of people with diabetes and kidney diseases to raise significantly. This will require a more integrated approach between dialectologists/nephrologists and the primary care teams (55).

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to their being the intellectual property of Shiraz University of Medical Sciences but are available from the corresponding author on reasonable request.

Abbreviations

  • Chronic kidney disease

End-stage renal disease

Glomerular filtration rate

Renal replacement treatment

Urinary tract infection

Odds ratios

Confidence intervals

Hypertension

Acute kidney injury

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Acknowledgments

This paper is part of a thesis conducted by Mousa Ghelichi-Ghojogh, Ph.D. student of epidemiology, and a research project conducted at the Shiraz University of Medical sciences (99-01-04-22719). We would like to thank Dr. Bahram Shahryari and all nephrologists of Shiraz‌ University of medical sciences, interviewers, and CKD patients in Shiraz for their voluntary participation in the study and for providing data for the study.

Shiraz University of Medical Sciences financially supported this study. (Grant number: 99–01–04-22719).

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Mohammad Fararouei

Department of Epidemiology, School of Health, Shiraz University of Medical Sciences, Shiraz, Iran

Mozhgan Seif

Nephrologist, Shiraz Nephro-Urology Research Center, Department of Internal Medicine, Emergency Medicine Research Center, Shiraz University of Medical Sciences, Shiraz, Iran

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MGG: Conceptualization, Methodology, Statistical analysis, Investigation, and writing the draft of the manuscript. MP: were involved in methodology, writing the draft of the manuscript, and clinical consultation. MS: was involved in the methodology and statistical analysis. MF: was involved in conceptualization, methodology, supervision, writing, and reviewing the manuscript. The authors read and approved the final manuscript.

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The study protocol was reviewed and approved by the ethical committee of Shiraz University of Medical Sciences (approval number: 1399.865). All methods were performed in accordance with the relevant guidelines and regulations of the Declaration of Helsinki. The participants were assured that their information is used for research purposes only. Because of the illiteracy of a considerable number of the patients, verbal informed consent was obtained from the participants. Using verbal informed consent was also granted by the ethical committee of Shiraz University of Medical Sciences.

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Ghelichi-Ghojogh, M., Fararouei, M., Seif, M. et al. Chronic kidney disease and its health-related factors: a case-control study. BMC Nephrol 23 , 24 (2022). https://doi.org/10.1186/s12882-021-02655-w

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DOI : https://doi.org/10.1186/s12882-021-02655-w

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case study chronic kidney failure

Management of patients with heart failure and chronic kidney disease

  • Published: 29 July 2024

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case study chronic kidney failure

  • Lingling Wu 1 ,
  • Mario Rodriguez 2 ,
  • Karim El Hachem 3 ,
  • W. H. Wilson Tang 4 &
  • Chayakrit Krittanawong   ORCID: orcid.org/0000-0001-7953-335X 5  

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Chronic kidney disease (CKD) and heart failure are often co-existing conditions due to a shared pathophysiological process involving neurohormonal activation and hemodynamic maladaptation. A wide range of pharmaceutical and interventional tools are available to patients with CKD, consisting of traditional ones with decades of experience and newer emerging therapies that are rapidly reshaping the landscape of medical care for this population. Management of patients with heart failure and CKD requires a stepwise approach based on renal function and the clinical phenotype of heart failure. This is often challenging due to altered drug pharmacokinetics interactions with various degrees of kidney function and frequent adverse effects from the therapy that lead to poor patient tolerance. Despite a great body of clinical evidence and guidelines that have offered various treatment options for patients with heart failure and CKD, respectively, patients with CKD are still underrepresented in heart failure clinical trials, especially for those with advanced CKD and end-stage renal disease (ESRD). Future studies are needed to better understand the generalizability of these therapeutic options among heart failures with different stages of CKD.

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Cardiovascular Division, University of Alabama at Birmingham, Birmingham, AL, USA

Lingling Wu

John T Milliken Department of Medicine, Division of Cardiovascular disease, Section of Advanced Heart Failure and Transplant, Barnes-Jewish Hospital, Washington University in St. Louis School of Medicine, St. Louis, USA

Mario Rodriguez

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Karim El Hachem

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W. H. Wilson Tang

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Chayakrit Krittanawong

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LW, MR, and CK wrote the original draft. KEH, CK, and WT edited. CK and WT supervision. All authors have reviewed and approved the manuscript.

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Wu, L., Rodriguez, M., Hachem, K.E. et al. Management of patients with heart failure and chronic kidney disease. Heart Fail Rev (2024). https://doi.org/10.1007/s10741-024-10415-9

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Case Report

Treatment of end-stage renal disease with continuous ambulatory peritoneal dialysis in rural guatemala, jillian moore.

1 Harvard Medical School, Boston, Massachusetts, USA

2 Wuqu' Kawoq, Santiago Sacatepéquez, Guatemala

Pablo Garcia

3 Department of Medicine, Saint Peter’s University Hospital, New Brunswick, New Jersey, USA

Peter Rohloff

4 Department of Medicine, Brigham and Women’s Hospital, Boston, Massachusetts, USA

David Flood

5 Departments of Medicine and Pediatrics, University of Minnesota, Minneapolis, Minnesota, USA

A 42-year-old indigenous Maya man presented to a non-profit clinic in rural Guatemala with signs, symptoms and laboratory values consistent with uncontrolled diabetes. Despite appropriate treatment, approximately 18 months after presentation, he was found to have irreversible end-stage renal disease (ESRD) of uncertain aetiology. He was referred to the national public nephrology clinic and subsequently initiated home-based continuous ambulatory peritoneal dialysis. With primary care provided by the non-profit clinic, his clinical status improved on dialysis, but socioeconomic and psychological challenges persisted for the patient and his family. This case shows how care for people with ESRD in low- and middle-income countries requires scaling up renal replacement therapy and ensuring access to primary care, mental healthcare and social work services.

Case presentation

A 42-year-old indigenous Maya man with a 6-year history of type 2 diabetes presented to a non-profit clinic in a rural agricultural town in Guatemala with weight loss, fatigue and weakness. Six years prior to presentation, he had been diagnosed with diabetes and later admitted to a regional hospital in a coma due to a hyperglycaemic crisis. After discharge from the hospital, the patient lost his job as a construction worker. As he could not afford antidiabetic medications or private physician fees, he abandoned outpatient treatment until being referred to the non-profit clinic.

On presentation, his examination was notable for cachexia, inability to ambulate and severe peripheral neuropathy. His weight was 32.7 kg with a body mass index of 14.5 kg/m 2 , and his blood pressure was 90/60 mm Hg. Random fingerstick blood glucose was over 600 mg/mL (normal <200 mg/mL), serum creatinine was 1.1 mg/dL (normal range 0.7–1.2 mg/dL) and urine albumin to creatinine ratio (ACR) was 40 mg/g (normal <30 mg/g). Haemoglobin A1c testing was not available. He had undergone bilateral cataract surgery approximately 2 years prior to presentation, and ophthalmologic evaluation at that time did not reveal retinopathy. The patient was started on insulin NPH. Following his initial presentation, the non-profit clinic procured point-of-care haemoglobin A1c testing, which resulted at 7.0% (normal range 3.9%–6.5%) 12 months after presentation. Repeat screening creatinine at this time was again normal.

Approximately 18 months after his initial presentation, the patient reported persistent difficulty gaining weight, as well as interval development of severe nausea and anorexia. An evaluation for failure to thrive was initiated at a higher-level laboratory in the regional capital. Results were notable for a serum creatinine of 7.57 mg/dL (glomerular filtration rate 8.5 mL/min/1.732) and blood urea nitrogen of 68.0 mg/dL (normal range 6.0–21 mg/dL), which were confirmed on repeat. Serum potassium, liver function tests, C reactive protein, thyrotropin, HIV, viral hepatitis antibodies, antinuclear antibodies, serum protein electrophoresis and urinalysis (with the exception of the presence of glycosuria) were normal. Haemoglobin was 7.3 mg/dL (normal range 12–16 mg/dL) with normal mean corpuscular volume. A renal ultrasound showed bilateral atrophic kidneys with increased echogenicity, two small non-obstructive echogenic foci suggestive of kidney stones and no significant hydronephrosis. Additional information obtained at this time confirmed that the patient had no known history of hypertension, urinary tract infections (UTIs), nephrolithiasis or exposure to nephrotoxic agents.

The patient was referred to the National Centre for Chronic Renal Disease (UNAERC), an institution in Guatemala City serving as the public nephrology centre. At UNAERC, the aetiology of his end-stage renal disease (ESRD) was not definitively elucidated, and a kidney biopsy was not pursued given the chronic and irreversible nature of his renal disease. Renal replacement therapy was recommended, and the patient was presented two options: twice-weekly haemodialysis at UNAERC, or continuous ambulatory peritoneal dialysis (CAPD) multiple times daily in his home. He chose CAPD, as limited mobility and finances precluded him from travelling to Guatemala City, a 3-hour bus trip each way. The patient initiated home CAPD after an abdominal catheter was placed and a sterile dialysis room was constructed in his home.

As of the writing of this case report, the patient has performed CAPD four times per day for 3 years. Clinically, he has improved considerably. He has more energy, can ambulate and has gained 10 kg. He has experienced no episodes of peritonitis. However, due to severe peripheral neuropathy and weakness, he must always be accompanied outside the home, sleeps with difficulty and requires assistance with most self-care activities in addition to his dialysis exchanges. He has not returned to work.

Socioeconomically and psychologically, the patient and his family have struggled. His wife cannot hold a regular job given her role as primary caregiver, and Guatemala does not have a national disability programme to support individuals who cannot work due to illness or injury. While UNAERC provides free clinical consultations and dialysis supplies, it does not cover other aspects of care including transportation, medications, nutritional supplements, primary care or emergency care. The patient and his family have subsided on donations from the non-profit clinic and their local church, as well as the meagre wages his wife earns weaving belts (US$33 monthly). The patient has four young children, and he worries constantly about the future. His chronic diseases have caused him to feel distress, helplessness and shame, yet he has not been formally evaluated for a mood or anxiety disorder given the lack of mental health practitioners in his rural town.

Global health problem list

  • Many people in rural areas of low- and middle-income countries (LMICs) do not receive adequate primary healthcare due to poverty, geographic barriers and health system limitations. Underfunded rural public health systems struggle to prevent, detect and manage chronic diseases, including chronic kidney disease (CKD).
  • Given obstacles to renal transplantation, dialysis is often the only feasible option for patients with ESRD in LMICs. Access to dialysis is limited in rural areas, and there is great need for community-based dialysis programmes.
  • Debilitating illnesses like ESRD cause economic, social and psychological burdens for patients and their families in LMICs. Access to primary care, mental healthcare and social work services is important for these patients and their families.

Global health problem analysis

This case describes a patient who developed ESRD of uncertain aetiology and who now requires dialysis. This story is increasingly common in LMICs like Guatemala, as a rising prevalence of nephropathies of various causes confers an increasing burden of ESRD and an urgent need to expand access to renal replacement therapy. However, many public health systems do not have the resources or capacity to provide comprehensive care to patients with ESRD. Given the rising rates of renal disease in LMICs, it is essential to reflect on why patients develop CKD, what can be done to prevent this condition, and how to best care for patients when disease progresses to its end stage.

CKD in Guatemala

Guatemala is an LMIC in Central America with a population of 16 million people. While the epidemiology and risk factors for renal disease are not well understood in Guatemala, available evidence including from the Global Burden of Disease Study suggests that, as in other LMICs, the burden of CKD is significant and rising. 1 2 WHO estimates that renal failure mortality in Guatemala in 2007 was 24.7 per 100 000 people, one of the highest rates in the Americas. 3 In the Latin American region, diabetes has been identified as the leading cause of CKD requiring dialysis, and, as of 2013 in Guatemala, 30% of new patients requiring renal replacement therapy had diabetes. 4 Our organisation previously reported high rates of CKD in a rural diabetes cohort, 5 6 data which were consistent with evidence from Mexico showing a strong link between diabetes and renal cause of death. 7

For the patient in this case, the aetiology of CKD remains unknown, and a wide differential includes diabetic nephropathy, nephrotoxic exposure, chronic nephrolithiasis, chronic UTIs and other causes. The patient has a 6-year history of uncontrolled diabetes and has experienced diabetes complications such as hyperglycaemic crisis and severe peripheral neuropathy. However, he does not meet criteria for diabetic kidney disease given that he had no history of diabetic retinopathy, did not have severely increased albuminuria (previously known as macroalbuminuria, ACR >300 mg/g) and had a more rapid progression of renal disease than would typically be expected from diabetes alone. 8 He also did not have a history or laboratory evidence suggestive of other common causes of ESRD—including hypertension, UTIs or nephrotoxic ingestion. Although echogenic foci were found on renal ultrasound, the pattern was not consistent with nephrocalcinosis, and the presence of non-obstructing kidney stones without hydronephrosis in a patient denying a history of symptoms of renal colic makes chronic nephrolithiasis seem less likely as the primary aetiology for his CKD.

In recent decades, there has been an increasing incidence of renal disease of uncertain aetiology in Central America observed in male agricultural workers in coastal areas. This entity has been termed ‘CKD of non-traditional aetiology’ (CKDnT) and is a source of active research throughout the region. The Pan American Health Association (PAHO) recently released a report on CKDnT epidemiology, consensus case definitions and methods for surveillance. 9 In Guatemala, dialysis enrolment rates may be higher along the southwestern coast. 10 11 However, epidemiological studies using dialysis registries are susceptible to confounding as indigenous Maya people, like this patient, tend to live in highland rather than coastal towns and also face barriers to accessing dialysis. 12 The patient described in this case does not meet PAHO technical criteria for a ‘confirmed clinical case of CKDnT’ given the presence of diabetes with diabetic neuropathy. 9

Renal replacement therapy in rural Guatemala

Once a person develops ESRD, the only means of survival are through renal replacement therapy, which includes dialysis—haemodialysis or peritoneal dialysis—or renal transplantation. Like other nephrology-related medicines and technologies, renal replacement therapy is unequally distributed around the world. Millions of people die prematurely each year because they cannot access dialysis or transplantation, particularly in LMICs. 13 14 Even among those who can access renal replacement therapy, there are significant outcome disparities by socioeconomic status and geography. 13 15 16

Kidney transplantation confers survival and quality of life advantages over dialysis. 17 The first renal transplantation programme in Guatemala was launched in the 1980s in the Social Security health system. 18 In 2015, according to data from the National Nephrology Association, there were 117 total kidney transplantations: 68% were performed in the public sector, 15% of transplant recipients were children and 17% involved deceased-donor kidneys. 19 The overall renal transplantation rate in Guatemala in 2013 was 5.6%, which is lower than the overall rate in Latin America of 19.8%. 4 Barriers to expanding access to renal transplantation include limitations in public sector funding, lack of structured waiting lists, incomplete coverage of post-transplant immunosuppression therapy, opt-in organ donation laws and minimal health protection for living donors. 20

In Latin America, rates of dialysis are rising sharply, and haemodialysis is the modality of choice in 90% of cases. 4 Guatemala is unique in that more than half of dialysis patients undertake peritoneal dialysis, giving the country one of the highest per capita rates of peritoneal dialysis in the world. 21 The public nephrology centre, UNAERC, manages a dialysis caseload of approximately 4500 people, of which two-thirds use CAPD. 22 Advantages of CAPD over haemodialysis include allowing rural patients to undertake therapy in their homes, requiring less infrastructure or specialised staff and not depending on the availability of rationed machines. 23 Rural CAPD programmes have been reported in multiple LMICs. 24–26

Patients at UNAERC receive, free of charge, all supplies directly necessary for CAPD: expert nephrology consultation, catheter insertion and maintenance, dialysis solution and laboratory monitoring of dialysis function. Basic survival is the chief concern. Unfortunately, UNAERC is unable to fund treatment for many sequelae of ESRD such as anaemia, mineral bone disease, hypertension, metabolic acidosis or dyslipidaemia. Additionally, the rural public healthcare system is not adequately equipped to meet the considerable primary healthcare concerns of patients with ESRD, which may include insomnia, pruritus, diabetes, hypertension, neuropathy, diarrhoea, sexual dysfunction and depression.

Systemic barriers to primary care in rural Guatemala

The Guatemalan healthcare system is marked by extreme fragmentation, privatisation and inequity. 12 The rural public healthcare system was established following the 1996 Peace Accords, which formally ended a 36-year civil war. The system was designed primarily to deliver basic preventative services to mothers and children. 27 While the disease landscape has shifted considerably since 1996, with chronic conditions comprising an increasingly significant burden, the health system has not been reoriented to this new epidemiology. Overall, the public health system in Guatemala is persistently underfunded; as a per cent of GDP, the country has the lowest government spending on health in Central America. 28

Like the patient in this case report, over half of Guatemalans are indigenous Maya, a group that faces formidable socioeconomic, linguistic and geographic barriers to healthcare. 12 Indigenous populations have high rates of poverty, limited access to education and poor health as measured by a range of indicators including infant mortality, child malnutrition and access to prenatal care. 29 The most reliable data on health disparities between indigenous and non-indigenous people derive from reproductive health surveys, which generally suggest that such poorer health indicators in indigenous groups are not solely explained by poverty and rural residence. 29 There are limited studies on the prevalence and outcomes of diseases like diabetes, cancer or CKD in indigenous areas. Available data show that ethnic disparities exist in both paediatric and adult populations. 30–32

In theory, all Guatemalans can access primary healthcare either within the network of free clinics and hospitals operated by the Ministry of Health (MOH), through a system of employment-based insurance at designated facilities, or at military hospitals. However, in reality, only a small proportion of the population has public or private insurance, particularly in rural areas, and MOH healthcare is limited by resource constraints. For example, patients at MOH health centres may be sent to purchase basic medications or laboratory tests, and certain resources like insulin are typically only available at regional referral hospitals. With these shortcomings in the public health system, many Guatemalans seek care in the private sector. While private sector care is considered more responsive than care delivered at public health centres, private care is expensive and fragmented. In general, the poorest and most marginalised patients are unable to access regular primary care for chronic diseases like diabetes or CKD.

This case illustrates many of the major challenges in accessing chronic disease care for both diabetes and CKD in rural Guatemala. Prior to seeking care at the non-profit clinic, the patient had entered a sickness-poverty cycle due to uncontrolled diabetes: he became too sick to work, then too poor pay for quality healthcare and medications and consequently he became even sicker. On developing CKD, there was no coordination between the public nephrology clinic and his local health centre and no primary care infrastructure to manage his associated symptoms and conditions. His indigenous ethnicity may have also contributed to his poor diabetes control and difficulty accessing high-quality primary care services.

While strengthening the rural public health system would be the most powerful approach to improve primary care in rural Guatemala—and to thereby both prevent and manage chronic disease—in the current political and economic environment, it is difficult to imagine the government dramatically increasing public outlays for chronic disease care. Care coordination and intensive social work interventions are potential strategies to assist patients with ESRD and other complex care needs, and there are examples of such programmes in Guatemala. 30 31 33 34 However, scaling up such interventions would require massive philanthropic or public sector investments.

The patient in this case is fortunate to live in a country providing public dialysis services to impoverished patients with ESRD from rural areas. Nevertheless, although dialysis has prolonged his life, this therapy has not necessarily nurtured his quality of life. With a national kidney transplantation rate of less than 6%, 4 most Guatemalans with ESRD, like the patient in this case, have no reasonable hope for life beyond dialysis. We therefore should consider what makes life worth living for those able to successfully access dialysis in places like rural Guatemala.

Lived experiences of ESRD

The typical trajectory of ESRD resembles those of other organ failures: chronic, progressive debility interposed by episodes of acute decompensation, with death often sudden and unexpected. Like the patient in this report, people on dialysis can survive for years during which they may endure fatigue, weakness, pruritus, insomnia, pain, depression and functional impairment—in addition to the symptom burdens of comorbid conditions. These patients must adhere to a demanding dialysis regimen in order to live, yet they cannot be certain what their lives will entail or how long they will survive.

The patient in this case is a poor, indigenous man whose chronic illnesses have limited him from employment as a construction worker. He lives in Guatemala, a nation infused with legacies of colonialism, racism and oppression. Historically, indigenous people have been viewed by the state primarily as a resource from which to extract unpaid physical labour for the production of commodities and public works. 35 Today, while indigenous people in Guatemala have more rights than in previous generations, the indigenous poor still often sell their labour in the informal economy. Rural men, like this patient, learn to maintain strong bodies to augment their labour potential and their ability to provide for their families. Hence, conditions of poverty and marginalisation lead to chronic illness and impairment, and also cause chronic illness and impairment to be felt more severely. 36

Chronic diseases like ESRD often preclude patients from fulfilling expected roles and may result in altered social identities and self-concepts. 37 The patient in this report tearfully described feeling like ‘a little baby’ unable to provide for his family or carry out basic activities of daily living without assistance from his wife and children. Indeed, those facing illness and impairment may perceive a loss of status within their families and communities, especially when moral worth is tied to a masculinity grounded in strength, endurance and the ability support others—as is common for men in rural Guatemala. Patients on dialysis may also endure tedium—an emptiness of time—as their treatment regimen ‘threatens to overcome, and for some patients, to become the life it extends.’ 38 The patient in this report has found meaning and joy being with his children, singing and praying, but others may not be similarly incorporated into family and community life.

As described in this report, patients on dialysis face significant social and occupational limitations from their time-consuming yet life-supporting treatment. Given the rising number of patients on dialysis in Guatemala and elsewhere who will never receive a kidney transplant, ‘health-related quality of life’—how patients perceive illness and treatment to affect their physical, mental, spiritual, emotional, social and functional well-being—has become an important dialysis outcome measure. 39  Standardised instruments have not been validated in most LMICs, where the focus is more often on basic treatment provision and survival. 40 Nonetheless, for patients on dialysis, poor health-related quality of life, 41 discrepancies between expected and received social support 42 and depressive symptoms 43 have each been found to be associated with increased mortality.

As with other chronic conditions, the impacts of ESRD are not limited to a single patient but rather permeate households and communities. Patients who once earned wages to support their families can no longer work, requiring household roles to shift to replace lost incomes. Furthermore, chronic illnesses like ESRD entail direct costs for medical treatment and indirect costs such as the uncompensated labour of family members who provide caregiving. In countries like Guatemala without universal disability or health insurance programmes, those in poverty are exquisitely sensitive to out-of-pocket catastrophic health expenditures. 44 The patient in this case has successfully performed dialysis for multiple years, in part due to material support received from a local church, extended family and a non-governmental organisation. Other ESRD patients in poverty who lack such support are unlikely to successfully access and sustain dialysis in Guatemala.

In addition to providing resources and basic income, the families and communities of patients with ESRD must often provide intimate care, including feeding, bathing, grooming, dressing and toileting. Although gender roles are shifting, 45 46 in rural Guatemala, as in many cultures, there is a gendered division of labour in which women perform reproductive labour in the private sphere—including tending to the young, elderly and sick—and men perform productive labour in the public sphere. 47 For the man in this case, his wife provides him constant and intimate care, and also works to generate income to provide for their four children.

In summary, the rising rate of patients with ESRD in LMICs will require rapidly scaling up nephrology care and interventions like dialysis and renal transplant. As this case illustrates, comprehensive ESRD care also must include access to primary care, mental healthcare and social work services.

Patient’s perspective

  • ‘My dream would be that my kidneys would work again, and that I could stop dialysis…One of the hardest things for us are trips to nephrology appointments in Guatemala City—getting up at 2:00 a.m., bringing my wheelchair, and the long bus rides…You have to have faith in God and a lot of patience with this disease. When I heard the news that my kidneys were failing, I felt that my life was over. It’s an incurable disease, and there isn’t any way for my kidneys to recover. The only option is dialysis, which I will have to do for the rest of my life. Sometimes, I feel like I just don’t want to do dialysis anymore. But when the time comes to do my exchanges, I confront those feelings and just keep going. Like I said, you have to have patience with this disease.’

Learning points

  • Health systems in resource-limited countries may struggle to prevent, detect and manage chronic diseases like diabetes and chronic kidney disease.
  • Worldwide, rising numbers of patients with end-stage renal disease (ESRD) require expansion of dialysis and renal transplantation, especially in rural areas.
  • ESRD has significant impacts on the quality of life of patients and their families.
  • Care for patients with ESRD requires meeting the comprehensive needs of these patients, including access to primary care, mental healthcare and social work services.

Contributors: JM and DF conceptualised the manuscript and wrote the first draft. DF and PR led clinical care of the patient. PR and PG critically revised the manuscript.

Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests: None declared.

Patient consent: Obtained.

Provenance and peer review: Not commissioned; externally peer reviewed.

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