Renal replacement therapy: available information versus demands of patients

Objective

This study examined the current state of information on renal replacement therapy and the educational demands of kidney transplant recipients.

Methods

The study was conducted through a survey. The questionnaire of this study was developed by researchers and was completed by 72 kidney recipients.

Results

The recipients were most frequently informed of hemodialysis (87.5%), followed by kidney transplantation (69.4%) or peritoneal dialysis (48.6%) as a modality of renal replacement therapy at the time of diagnosis of chronic renal failure. Information about kidney transplantation was provided when they were diagnosed with end-stage renal disease (ESRD; 33.3%) or right after initiation of dialysis (15.3%) or a few years thereafter (9.7%). They were informed about kidney transplantation mostly by transplantation surgeons (mean degree score = 3.1 ± 1.3; range, 1-4), followed in order by transplant coordinators, nephrologists, family members, other patients, artificial kidney unit nurses, and mass media or internet. Regarding the influence of the information on their decision to receive a transplant, the mean score was 3.2 ± 1.2 (range, 1-5). Also, kidney transplantation was evaluated as the best renal replacement therapy for work, pregnancy/delivery, traveling, and diet.

Conclusion

Patients diagnosed with ESRD are not fully informed of transplantation as a primary optimal renal replacement therapy for their quality of life.     

Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis

BACKGROUND: Nephrologists report that patients' choice should play an important role in the selection of renal replacement therapy (RRT) for end-stage renal disease (ESRD). In the United States, kidney transplant rates remain low and <10% of patients utilize home dialysis therapies. This study examined the effect of pre-ESRD processes on the selection of RRT among incident ESRD patients. METHODS: Using surveys, data were collected for all patients admitted to 229 dialysis units in ESRD Network 18 between April 1, 2002 and May 31, 2002. A total of 1365 patients began chronic dialysis and 1193 facility (87%) and 428 patient (31%) surveys were returned. RESULTS: Substantial proportions of patients were unaware of their kidney disease (36%) or were not seeing a nephrologist (36%) until <4 months before first dialysis. The presentation of treatment options was delayed (48% either after or < 1 month before the first dialysis). The majority of ESRD patients were not presented with chronic peritoneal dialysis, home hemodialysis, or renal transplantation as options (66%, 88%, and 74%, respectively). Using multivariate analyses, variables significantly associated with selection of chronic peritoneal dialysis as dialysis modality were the probability of chronic peritoneal dialysis being presented as a treatment option and the time spent on patient education. CONCLUSION: An incomplete presentation of treatment options is an important reason for under-utilization of home dialysis therapies and probably delays access to transplantation. Improvements in and reimbursement for pre-ESRD education could provide an equal and timely access for all medically suitable patients to various RRTs.     

Comparative studies of dialysis therapies should reflect real world decision-making

The incidence and prevalence of end-stage renal disease (ESRD) continues to rise. While transplantation is the preferred therapy for kidney failure, there is a shortage of donor organs, and the majority of patients will be treated with either peritoneal dialysis (PD) or hemodialysis (HD). Randomized controlled trials comparing patient outcomes on PD and HD are not likely to be successful, as individuals who are educated about their treatment options generally develop a strong preference for one therapy over the other and will not consent to randomization. As a result, prospective cohort studies are frequently the strongest study design available to compare outcomes between dialysis modalities. Previous studies have provided important insights into the relative merits of the 2 therapies. However, they have examined outcomes in relatively heterogeneous groups of ESRD patients and are generally not designed in a manner that mirrors clinical decision-making. We explore several key methodological challenges in the design of observational research in ESRD with a focus on minimizing selection bias and making studies more relevant to the practicing nephrologist. We emphasize that incident patients are preferred in most comparative studies of dialysis modalities. We argue that analyses comparing the outcomes of renal replacement therapy (RRT) modalities should include patients eligible for the therapies being compared and that the way that patients are assigned to treatment groups should reflect decision-making in clinical practice. Finally, the point at which baseline characteristics are measured and we begin tracking patients for the occurrence of outcomes should be chosen carefully.     

Nephrologists as primary care providers: a review of the issues

Considering the role of nephrologists as primary care providers for their chronic dialysis patients requires exploration of a number of factors. These factors include the definition of a primary care provider, the time and expertise needed to provide primary care, the expectations of nephrologists and dialysis patients who give and receive primary care, the appropriate preventive care for end-stage renal disease (ESRD) patients, and the current and future roles of nephrologists within a changing health care environment. Unfortunately, few studies have addressed these issues, and there is little objective information on which to base guidelines and recommendations about nephrologist-directed primary care of ESRD patients. Most nephrologists spend a significant portion (30% to 35%) of their time caring for dialysis patients, and 90% report providing primary care to dialysis patients. Most dialysis patients view their nephrologist as their primary care provider. The increasingly aged and ill ESRD population will undoubtedly necessitate additional time and expertise for care from an understaffed nephrology work force. The increased use of advanced practice nurses and alliances with health care delivery systems under global capitation programs may develop into effective strategies to provide care for an increasing population of dialysis patients. The nonnephrologic health care needs, including specific and appropriate cancer screening and preventive health care protocols for ESRD patients whose life expectancies are significantly less than the general population, are unclear. The issues involved in considering nephrologists as primary caregivers for ESRD patients include these and other related factors, and will be discussed in this review.     

Nephrogenic systemic fibrosis: recommendations for gadolinium-based contrast use in patients with kidney disease

Nephrogenic systemic fibrosis is a systemic disorder characterized by widespread tissue fibrosis. Gadolinium-based contrast (GBC) was recently noted as a possible trigger for this disease. The vast majority of cases occur in patients with ESRD receiving hemodialysis or peritoneal dialysis. However, approximately 10% of cases develop in patients with AKI (many requiring dialysis), advanced CKD stage 4, and CKD stage 5 not receiving renal replacement therapy. Recommendations to guide the use of GBC in patients with underlying kidney disease are presented. These clinical practice guidelines should be individualized and considered in consultation with the ordering physician, radiologist, and nephrologist.     

Patient information about options for treatment: Methods of a national audit of information provision in chronic kidney disease

The new CARI guidelines for 'Acceptance onto dialysis' suggest patients with chronic kidney disease are referred to a nephrologist at an estimated glomerular filtration rate of <30 ml/min per 1.73 m2, to allow 3-6 months for pre-dialysis education, creation of dialysis access, and planned initiation of renal replacement therapy or conservative management. Similarly, international guidelines recommend education for patients and their families occurs 6 to 12 months prior to the predicted onset of end stage kidney disease or during Stage 4 or Stage 5 chronic kidney disease. However, some patients commencing treatment may not receive information about their options at a time that facilitates effective and informed decision making or that enables consideration of treatment other than centre-based haemodialysis. Implementation of chronic kidney disease education guidelines has not been widely reported and there are few published studies that assess the provision and delivery of information about all treatment options. Patient INformation about Options for Treatment (PINOT) is a prospective national audit of the type and timing of information provided by renal units to incident pre-emptive transplant, dialysis and conservatively managed patients over a 3-month period. PINOT will assess the patient and unit characteristics associated with timely information provision and highlight any regional variation in treatments offered.     

Withholding and withdrawing dialysis: the role of physician specialty and education and patient functional status

Withholding and withdrawing dialysis are subjects of major concern to nephrologists, because both result in a significant number of end-stage renal disease (ESRD) patient deaths. The medical literature on withholding dialysis is extremely limited, and that on withdrawing dialysis consists mainly of retrospective studies from the 1980s. The present study was conducted to identify ways to improve dialysis decision making by providing a current understanding of how decisions to withhold or withdraw dialysis are being made and by examining whether some patients who might benefit from dialysis are not being referred. In 1995, 22 of 27 (82%) nephrologists practicing in West Virginia agreed to participate in a year-long prospective study in which they completed forms on each patient from whom they withheld or withdrew dialysis. Seventy-six of a random sample of 214 (36%) primary care physicians returned questionnaires describing their practice experience in 1995 with patients with advanced chronic renal failure. The nephrologists withdrew dialysis from 60 of 822 (7%) patients. Academic nephrologists who had received education in the ethics and law of stopping dialysis withdrew it from a greater percentage of patients than those in private practice (12% v 6%; P = 0.009). Patients who were withdrawn more often resided in nursing homes (37% v 2%; P < 0.0001). Twenty-one patients (37%) lacked decision-making capacity at the time the decision was made to withdraw dialysis. Advance directives were available for 13 of the 21 (62%) patients: eight of the 10 treated by academic nephrologists and five of the 11 treated by private practice nephrologists. Academic nephrologists found advance directives to be helpful in decision making to withdraw dialysis of incapacitated patients more often than nephrologists in private practice (70% v 9%; P = 0.004). Nephrologists withheld dialysis from 25 of 357 (7%) ESRD patients compared with 42 of 193 (22%) withheld by primary care physicians (P < 0.001). In deciding not to refer a patient for a dialysis evaluation, 25% of primary care physicians did not consult a nephrologist; 60% cited age as a reason not to refer. These findings suggest that dialysis decision making might be improved by educating nephrologists about the ethics and law of withdrawing dialysis and about how to implement successfully advance care planning so that advance directives will be present and helpful when decisions need to be made for incapacitated dialysis patients. Education of primary care physicians about when to refer patients with chronic renal failure for a dialysis evaluation might also result in more referrals for patients who will benefit from dialysis.     

Improving Outcomes in Patients with Lupus and End‐Stage Renal Disease

The development of lupus‐related end‐stage renal disease (ESRD) confers the highest mortality rates among individuals with lupus. Lupus‐related ESRD is also associated with higher morbidity and mortality rates compared with non‐lupus ESRD. We review the evidence that persistent lupus activity, hypercoagulability, and continuing immunosuppression may contribute to unfavorable outcomes in dialysis and renal transplantation among lupus patients. Robust epidemiologic studies are needed to develop individualized evidence‐based approaches to treating lupus‐related ESRD. In the meantime, managing lupus‐related ESRD presents a significant challenge for clinicians and requires a team approach involving nephrologists and rheumatologists. Goals of therapy after developing ESRD should include continuing monitoring of lupus activity, minimizing corticosteroid exposure, and choosing the most appropriate renal replacement therapy based on patient's risk profile and quality‐of‐life considerations.     

Initiation of Dialysis Should be Timely: Neither Early Nor Late

Over the last decade, individuals with end‐stage renal disease (ESRD) in the United States are starting maintenance dialysis therapy at progressively higher estimated glomerular filtration rate (eGFR). Moreover, several observational studies have demonstrated an association of a higher risk of death with higher serum creatinine‐based estimates of GFR at the time of initiation of dialysis. In contrast, studies in which renal function has been measured by timed urinary collection show either a lower risk of death or no significant association with higher GFR at the time of initiation of dialysis. There are numerous potential sources of bias in such observational studies, particularly in those that use serum creatinine‐based eGFR. The only randomized controlled clinical trial to have examined this question did not demonstrate either benefit or harm with initiation of dialysis at higher level of renal function. Thus, the data to date suggest that eGFR should not be the sole consideration when assessing the need for initiating maintenance dialysis in patients with advanced chronic kidney disease. Given the high societal costs of starting renal replacement therapy earlier in the course of the disease, these considerations also suggest that dialysis can be safely be postponed in otherwise asymptomatic individuals with advanced chronic kidney disease. By the same token, dialysis should not be denied to individuals who could clearly benefit from renal replacement therapy simply because the GFR is too high (viz., volume overload, refractory hyperkalemia). Finally, there is a compelling need to reexamine the symptoms that could be attributed to uremia and clearly improve upon initiation of dialysis to better guide clinical decision‐making.     

Human immunodeficiency virus infection in end-stage renal disease patients

Human immunodeficiency virus (HIV) infection in patients with end-stage renal disease (ESRD) offers many diagnostic and therapeutic challenges to nephrologists. Renal failure may be a direct consequence of viral infection (HIV-associated nephropathy), or intrinsic renal diseases may occur in previously infected individuals. Patients receiving renal replacement therapy (RRT) may acquire HIV infection from blood transfusions, renal allografts, sexual contacts, or needle sharing by drug addicts. In the early 1980s, the overall prognosis of patients with the acquired immunodeficiency syndrome (AIDS) was very poor, and survival of those with ESRD was dismal. Consequently many even questioned the value of providing maintenance dialysis to patients with AIDS. With advances in diagnostic techniques in serologic and viral markers of disease, and deployment of highly effective antiretroviral agents, the prognosis of HIV-infected patients has dramatically improved. Over the past two decades, experiences in the management of HIV patients with ESRD is accumulating. Both peritoneal dialysis and hemodialysis are effective modes of therapy and many centers are now beginning to perform renal transplantation in HIV-infected patients. This article deals with various aspects of HIV infection in patients with ESRD.     

Renal replacement therapy in the elderly: medical, ethical, and psychosocial considerations

As patients over the age of 65 become the fastest growing segment of our treated end-stage renal disease (ESRD) population, nephrologists and allied healthcare workers who care for these patients must become well versed in the many issues specific to this group. Elderly patients contribute the greatest fraction to the incidence and prevalence of the United States ESRD population. Their life expectancy is greatly reduced compared with age-matched counterparts from the general population. Cardiac disease is the leading cause of death. Although renal transplantation remains the most successful form of renal replacement therapy, only a small fraction of elderly ESRD patients are transplanted. The renal research community has made great strides in improving patient outcomes on dialysis over the last decade in many areas; however, little attention has been focused on the elderly ESRD patient. The substantial mortality and comorbidity experienced by this population makes their management an ongoing challenge. Many unresolved issues remain for elderly ESRD patients in the timing of dialysis initiation, choice of dialytic therapy, use of renal transplantation, and management of cardiovascular disease. It is anticipated that future research in these areas will identify optimal treatment strategies for elderly ESRD patients starting on dialysis and improve patient outcomes.     

Fluoroscopy-assisted placement of peritoneal dialysis catheters by nephrologists

In the early 1950s and 1960s, peritoneal dialysis (PD) was used primarily to treat patients with acute renal failure. Continuous ambulatory peritoneal dialysis (CAPD) was introduced in 1976 and continues to gain popularity as an effective method of renal replacement therapy for patients with end-stage renal disease (ESRD). The PD catheter is inserted into the abdominal cavity either by a surgeon, interventional radiologist, or nephrologist. We have adopted a percutaneous approach with fluoroscopic guidance for PD catheter insertion that is easy, safe, and provides good patency and infection rate results. In this article we describe the technique and our results. From August 2000 to May 2003, 34 PD catheters out of 36 were successfully inserted using the percutaneous fluoroscopic technique in selected patients referred from the nephrology clinic. All the PD catheters were placed in our Interventional Nephrology Vascular Suite by nephrologists.     

Ethical and legal considerations in the care of the infant with end-stage renal disease whose parents elect conservative therapy

When parents elect conservative treatment for infants with end-stage renal disease (ESRD), their choice is medically, ethically, and legally acceptable, since dialysis and transplantation for young infants are still in the range of innovative and experimental treatments. Pediatric nephrologists have been reluctant to view these treatments as standard for very young infants because of doubts about their efficacy, technical difficulties in providing them for tiny patients, uncertainty about their short-term and long-term risks, and the suffering that they can create. Because these renal replacement therapies are not yet established, it is the responsibility of parents to determine whether the benefits of treatment outweigh its burdens for their infants. Physicians have an obligation to ensure that parents make a well-considered decision, and to provide them with counsel and support.     

End-stage renal disease in India and Pakistan: burden of disease and management issues

In the absence of national registries, no reliable data are available on the incidence and prevalence of end-stage renal disease (ESRD) in India and Pakistan. The incidence of ESRD is likely to be higher than that reported from the developed world, with chronic glomerulonephritis being the most common cause, accounting for more than one third of patients, while diabetic nephropathy accounts for about one fourth of all patients in India. Patients are generally younger (mean age 42 years) at the time of detection of ESRD and two-thirds first see a nephrologist after they have reached end stage. Treatment of ESRD is a low priority for the cash-strapped public hospitals and in the absence of health insurance plans, less than 10% of all patients receive any kind of renal replacement therapy. The vast majority of patients starting hemodialysis die or stop treatment because of cost constraints within the first three months, and less than 2% patients are started on ambulatory peritoneal dialysis. Although renal transplantation is the cheapest option, only about 5% of all patients with ESRD end up having a transplant. Living related donor transplants constitute 30 to 40% of all transplants in India, but there is a conspicuous gender bias with female donors donating kidneys for their male relatives. Cadaveric transplantation has yet to pick up and accounts for less than 2% of all transplants. The enactment of legislation to regulate renal transplantation in India has not been able to prevent unrelated (paid) donor transplants, which constitute 60 to 70% of all renal transplants. Cyclosporine, azathioprine and prednisolone continue to be the backbone of post-transplant immunosuppression, with cyclosporine being stopped in a significant proportion at one year post-transplant to cut down costs. Increasing awareness of renal disease amongst the population and general practitioners could result in early diagnosis of chronic renal failure and give opportunity for preventive strategies to delay the onset of ESRD. Preemptive transplantation and use of generic cyclosporine can help bring down the costs of treatment. Innovative and affordable health insurance policies can also increase the number of patients who receive effective treatment for ESRD in these two countries.     

Physician access and early nephrology care in elderly patients with end-stage renal disease

Early nephrology care may improve treatment outcomes of patients with end-stage renal disease. We sought to examine if physician access affects early nephrology care defined as visiting a nephrologist 12 to 4 months before initiating dialysis. The study population consisted of elderly patients starting hemodialysis whose demographic characteristics and initial dialysis therapy were derived from form 2728 files of the Centers for Medicare & Medicaid Services. Early nephrology care, chronic kidney disease and co-morbidities along with access to local non-nephrologist physicians and nephrologists were identified based on Medicare claims and/or United States 2000 Census data. About one-third of elderly patients received early nephrology care prior to initiating dialysis. Patients living in an area with a large number of non-nephrologist physicians or living relatively far away from a nephrologist had a lower likelihood of getting early nephrology care prior to initiating dialysis while those in an area with more practicing nephrologists were more likely to get early nephrology care. The study shows that physician access significantly influences the use of early nephrology care among elderly patients progressing to end-stage renal disease in the United States.     

Testosterone metabolism and replacement therapy in patients with end-stage renal disease

Hypogonadism is common among men with end-stage renal disease (ESRD), beginning before the need for dialysis and not improved with the initiation of dialysis. Many of the manifestations of hypogonadism, such as bone disease and muscle wasting, are also frequently seen among dialysis patients. There have been few studies of testosterone replacement therapy in this patient population, but available data suggest that testosterone can be administered without adjustment of the doses used in hypogonadal men with normal renal function. Extrapolation from results of treatment of hypogonadal older men with normal renal function suggests that testosterone replacement could improve libido and could have salutary effects on muscle mass and bone mineral density in patients with kidney disease. However, caution is warranted because of the potential side effects of testosterone therapy, and further research is needed to more precisely define the balance of risk and benefit in patients with chronic kidney disease. Specifically it will be important to determine the prevalence and clinical significance of hypogonadism in ESRD patients in the modern era and to measure the effects of replacement therapy on various symptoms of hypogonadism as well as on overall quality of life, physical functioning, and survival.     

Relationships of race and ethnicity to progression of kidney dysfunction and clinical outcomes in patients with chronic kidney failure

In the United States, the incidence of end-stage renal disease (ESRD) is much higher for blacks, Native Americans, and Asians than for whites. The incidence of kidney disease is also higher for populations of Hispanic ethnicity. ESRD attributed to diabetes (ESRD-DM), hypertension (ESRD-HT), and glomerulonephritis (ESRD-GN), in this order of frequency, are the major categories of ESRD in the United States for all race/ethnic groups. By using the incidence rates of ESRD, during the period from 1997 through 2000, and with whites as reference, the highest rate ratio (RR) was observed for ESRD-HT in blacks (RR = 5.96), ESRD-DM in Native Americans (RR = 5.11), and ESRD-GN in Asians (RR=2.20). The data suggest that the excess of ESRD observed for racial/ethnic minorities may be reduced by interventions aimed at prevention/control of hypertension and diabetes. The data suggest that before developing ESRD, patients with chronic renal failure from minority groups have to face more barriers to receive high-quality health care. This may explain why they see nephrologists later and are less likely to receive renal transplantation at initiation of renal replacement therapy (RRT). Improvements in quality of care after initiating RRT may explain the lower mortality and higher scores in heath-related quality of life observed for patients from racial/ethnic minorities.     

The elderly patient with chronic kidney disease

The elderly are a fast growing population in the United States, and they have a high prevalence of chronic kidney disease. The elderly are particularly susceptible to kidney damage from age-related declines in glomerular filtration as well as kidney damage from chronic disease states such as diabetes mellitus, hypertension, glomerular, and tubulointerstitial disorders. A significant number of elderly individuals are reaching end-stage renal disease that require renal replacement therapy. This expanding population provides a challenge for health-care providers because the elderly are often referred late to a nephrologist, have a shortened survival on renal replacement therapy as compared with younger individuals, and suffer from more comorbidities such as cardiovascular disease, malnutrition, and hearing and visual disabilities. The elderly also have difficulties with dialysis vascular access and often are not candidates for renal transplantation. Despite these obstacles, age alone is not a justification for withholding diagnostic or therapeutic interventions, because many elderly individuals have an improvement in their quality of life and social support once their kidney disease is identified and treated.     

Surgical Interventions for Renal Replacement Therapy from the View of Nephrologists

Summary BACKGROUND: The number of patients with end-stage renal disease (ESRD) is increasing worldwide at a rate of approximately 5 % per year. In Austria, 6049 patients were suffering from ESRD in the year 2001, an annual rate of 1093 patients. Higher age of patients and co-morbidities are forcing nephrologists to find the optimal renal replacement therapy (RRT) and access modality for the individual patient. METHODS: For patients with ESRD needing RRT, both nephrologist and surgeon should be consulted to ensure optimal management and treatment including vascular access surgery. Patients planned for peritoneal dialysis (PD) are treated with the cooperation of a visceral surgeon. A catheter is inserted into the pelvic area to enable solution exchange. In patients who are to undergo hemodialysis (HD), nephrologists have to decide whether the cardiac condition is suitable for surgical access creation such as fistula or graft. Otherwise alternative hemodialysis devices such as a central venous catheter (CVC), or subcutaneously implantable ports (Dialock^®), have to be discussed. Access function is routinely monitored during dialysis treatment, but still remains the weak component of extracorporeal RRT responsible for 40 % of hospitalization of HD patients. RESULTS: At the dialysis unit of the University Hospital of Graz, 107 patients were under RRT (70 HD and 37 PD), and 235 patients were hemodialyzed in private units in Graz in 2001. 81 ESRD patients were newly enrolled in the chronic HD program. 131 HD accesses were created in new HD patients and patients under treatment for chronic HD. 36 patients developed HD access complications and in these patients, 181 surgical and/or radiological interventions were performed. CONCLUSIONS: In 12 % of the HD patients in Graz, access problems occurred. These patients have a high frequency of surgical and radiological interventions. Access monitoring and measurement of recirculation may help to reduce the complication rate by 38 %. Before onset of RRT, patients need special management to ensure the best dialysis modality. ESRD patients who are suffering from cardiac diseases, diabetes mellitus, or bad peripheral vascular status need a multidisciplinary approach with nephrologists, cardiologists, surgeons and radiologists working together to find the optimal access for dialysis treatment.