Functional Assessment in End‐Stage Renal Disease: Enhancing Quality of Life

Why do functional assessments in patients with end‐stage renal disease (ESRD) matter? Multiple studies show that new dialysis patients undergo a substantial decline among activities of daily living. Moreover, poor functional status in ESRD patients is associated with early morality. That is why CMS has developed new criteria to assess ESRD patients in regards to their functional, psychologic, and cognitive capabilities. Functional assessments by health providers have been used in field of Rehabilitation Medicine for over 50 years; rehabilitation physicians have found them effective in establishing goals and monitoring improvement. Assessments can provide guidance by identifying the needs and types of intervention most suited for patients. Impairments can be addressed with referrals to physical therapy for gross motor issues, occupational therapy for self‐care problems, psychiatry for mental disorders, and neurology for cognitive deficits. The more accurate the assessments over time, the more targeted and effective the therapies become. We believe that the new CMS goals to assess functionality will improve ESRD patient's quality of life, longevity, and long‐term healthcare costs.     

How Can We Improve the Quality of Life of Dialysis Patients?

As medical advances are made in the care of persons with chronic illnesses including those with end‐stage renal disease (ESRD), patients are not only experiencing increasing life expectancy but also bearing the burden of illness and treatment for a longer duration of time. With this in mind, it is increasingly important for health care providers to pay close attention to their individual patient's perceptions of their health, fitness, life satisfaction, and well‐being. This assessment of Health‐Related Quality of Life (HRQOL) also includes an evaluation of the patient's level of satisfaction with treatment, outcome, and health status, also taking into account their perspective on future prospects. In addition to improving patient–provider communication by helping in the identification and prioritization of problems, it is important to note that high HRQOL has been shown to be associated with better medical outcomes, including reduction in hospitalizations and death. In this review, we outline several validated tools that are used to quantitatively measure HRQOL in the ESRD population and incorporate these instruments in a review of specific, evidence‐based measures by which we can measurably improve health‐related quality of life in dialysis patients.     

Palliative dialysis: Addressing the need for alternative dialysis delivery modes

For some patients with kidney failure, particularly those who have limited life expectancy or severe comorbidities, the “standard” dialysis treatment regimen may be perceived as excessively burdensome and may not align well with the patient's own priorities. For such patients, a palliative approach to the provision of dialysis—whereby treatment is tailored to the needs of the individual so as to optimize quality of life and minimize disease‐related symptoms, but limit treatment burden—might offer a way to better align the delivery of care with the life goals of the patient. Here, we discuss the fundamental principles of palliative dialysis: the patients who might most benefit from this approach, treatment strategies and considerations for implementation, as well as potential barriers to its provision.     

Palliative care: misconceptions that limit access for patients with chronic renal disease

There is an urgent need to incorporate palliative care into the treatment of patients with end‐stage renal disease (ESRD). These patients have a shortened lifespan and face end‐of‐life decisions as renal function declines and renal replacement therapy becomes necessary. They also experience a high symptom burden as a result of the illness as well as its treatment. Why, then, do patients with ESRD rarely receive expert palliative care services that have been shown to enhance the quality of life of patients with other life‐limiting illnesses? The lack of access to palliative care can be attributed, in part, to misconceptions about its philosophy and goals. It is hoped that clarification of these misconceptions will facilitate integration of palliative care into routine nephrology practice.     

Outcomes research in dialysis

Worldwide, the number of patients with end stage renal disease (ESRD) and the number of ESRD patients receiving renal replacement therapy is growing. In the United States the number of patients enrolled in the Medicare-funded ESRD program has grown substantially, from approximately 10000 beneficiaries in 1973 to 340261 as of December 31, 1999. United States has the highest incidence ESRD of 317 per million population. Despite the magnitude of resources committed to the treatment of ESRD and the substantial improvements in the quality of dialysis therapy, these patients continue to experience significant mortality and morbidity, and reduced quality of life. Moreover, 50% of dialysis patients have 3 or more comorbid conditions, the mean number of hospital days per year is approximately 14 per patient, and self reported quality of life is far lower in dialysis patients than in general population. The most desirable interventions are those that specifically target measurable global outcomes such as mortality, morbidity, and health care costs. Nevertheless, patient outcomes that have shown links with these global outcomes may also be appropriate targets for intervention. This article will briefly review the available literature to discuss the role of important clinical indicators on dialysis outcomes and their impact on continuing care of ESRD population.     

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.     

In Quality We Trust; but Quality of Life or Quality of Care?

The ESRD program provides medical care to a diverse and medically complex patient population. The care for the ESRD patient population has become increasingly benchmarked with process of care measures. These measures include dialysis adequacy, anemia, nutrition, and vascular access outcomes. These process‐related dialysis measures may not improve the care of the individual patient as care relates to the individual's goals and values. There is also evidence that these process measures may not be causally related to quality of life, hospitalization, and survival. The adoption of patient‐reported outcomes may shift the balance toward more patient‐centered care. However, the extent to which mandated measures of health‐related quality of life and patient satisfaction result in improved outcomes remains unclear.     

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.     

老年终末期肾病患者的透析方式选择

随着人口老龄化加剧,在全球范围内需要接受肾脏替代治疗的老年终末期肾脏病(ESRD)患者人数日益增加。老年ESRD患者由于年龄老化、生理机能下降、合并症多、自我维护能力差、预期生存时间短等特点给透析治疗亦带来了诸多困难。老年ESRD患者在透析的治疗时机、透析方式的选择上均具有其特殊性,需要根据患者原发病因、评估透析治疗可能带来的并发症、所在地医疗卫生条件等制定个体化的治疗方案。除了医疗技术因素外,还需综合考虑如患者预期寿命、对生活质量的期望以及对患者家庭的影响等其他非医疗因素。     

Daily hemodialysis: challenges and opportunities in the delivery and financing of end-stage renal disease patient care

Daily/home hemodialysis is the latest technologic advance in the care of end-stage renal disease (ESRD) patients, and promises improved clinical outcomes and quality of life. Should these benefits prove to be true, an increasing number of patients will be interested in this modality of care, raising challenges and opportunities for providers of care and payers, as well as patients themselves. For patients to have access to this and other new forms of technology to treat ESRD, it will be necessary to re-examine the current care delivery and financing systems and reconfigure these so that the incentives of best clinical practice and outcomes are properly aligned with appropriate and sensible cost constraint.     

RPA/ASN position on the use of disease management in ESRD care

The care of patients with chronic renal insufficiency and ESRD is at a major crossroad, and there is considerable uncertainty about the future. There are substantial risks for both the patients and the caregivers as well as opportunities to improve patient care and the milieu in which the care is provided. The treatment of ESRD and chronic renal insufficiency is moving into an era of collaborative care with RCMs, physician assistants, and advanced practice nurses predicated in large part on the anticipated shortage of nephrologists as the ESRD patient population continues to increase. The future of reimbursement is uncertain and payers may well have difficulty responding to new models of providing care. It is imperative that nephrologists accept the challenge and assume the leadership role as disease management and other collaborative methodologies of caring for our patients develop.     

Barriers to access by Indigenous Australians to kidney transplantation: the IMPAKT study

Although Indigenous Australians represent less than 2% of the national population, they account for 8-10% of new patients commencing treatment for end-stage renal disease (ESRD). Almost half come from remote regions lacking renal disease treatment services. In those regions, their incidence of ESRD is up to 30 times the incidence for all Australians. Kidney transplantation is the optimal treatment for ESRD. Compared with long-term dialysis, it results in better quality of life, longer life expectancy and lower costs of health care. Indigenous Australians with ESRD receive transplants at approximately one-third the rate of non-Indigenous patients. There are similar disparities in access to kidney transplants for Native Americans, Aboriginal Canadians and New Zealander Maori. The reasons for such disparities have not been studied in any detail. IMPAKT (Improving Patient Access to Kidney Transplantation) is an NHMRC-funded study, involving eight major renal units. It aims to identify the reasons for Indigenous Australians' poor access to transplantation. It will systematically examine each of the steps a new dialysis patient must negotiate in order to receive a transplant. Each of these steps can become a barrier.     

Barriers to access by Indigenous Australians to kidney transplantation: The IMPAKT study

SUMMARY:   Although Indigenous Australians represent less than 2% of the national population, they account for 8–10% of new patients commencing treatment for end-stage renal disease (ESRD). Almost half come from remote regions lacking renal disease treatment services. In those regions, their incidence of ESRD is up to 30 times the incidence for all Australians.
Kidney transplantation is the optimal treatment for ESRD. Compared with long-term dialysis, it results in better quality of life, longer life expectancy and lower costs of health care. Indigenous Australians with ESRD receive transplants at approximately one-third the rate of non-Indigenous patients. There are similar disparities in access to kidney transplants for Native Americans, Aboriginal Canadians and New Zealander Maori. The reasons for such disparities have not been studied in any detail.
IMPAKT (Improving Patient Access to Kidney Transplantation) is an NHMRC-funded study, involving eight major renal units. It aims to identify the reasons for Indigenous Australians' poor access to transplantation. It will systematically examine each of the steps a new dialysis patient must negotiate in order to receive a transplant. Each of these steps can become a barrier.     

Greater access to transplantation should be a priority: A view of the Dialysis PATIENTS Demonstration Act

Fragmentation of care has been cited as a rationale toward moving to new care models with care coordination and a focus on value‐based care delivery. This trend is gathering momentum in end‐stage renal disease (ESRD) care given evident care gaps and the variety of healthcare entities that touch patients with ESRD in the course of their treatment. Although care models supported by chronic condition special needs plans and ESRD seamless care organizations (ESCOs) have advanced care and cost‐effectiveness, their shortcomings limit their ability to support larger patient populations. New care models and potential organizational structures, such as those proposed in the Dialysis Patient Access To Integrated‐care, Empowerment, Nephrologists, Treatments, and Services (PATIENTS) Demonstration Act, provide another approach toward reducing fragmentation of care, increasing patient health, and helping define better approaches to care for patients with ESRD so that they have the opportunity to be better transplant candidates. We recognize that this type of innovation represents change without certainty. We also believe that multiple levels of accountability, ongoing support for transplantation, and continued freedom of access to transplant professionals who participate in Medicare would prioritize patient health, quality of life, and choice with regard to transplantation with this care model.     

Exercise in End‐Stage Renal Disease

This article will outline the clinical reasoning for exercise counseling in end‐stage renal disease (ESRD) patients and give healthcare providers detailed information on the different programs that can be implemented in this population according to patients’ specific needs. End‐stage renal disease patients often have other health problems that can be improved by participation in regular exercise programs. Research accumulated during the last 30 years on exercise for the ESRD population supports its numerous beneficial effects including those on cardiovascular capacity, sarcopenia, and health‐related quality of life. We describe the different types of exercise, aerobic and resistance programs (including their frequency, intensity and progression) that are recommended for the ESRD population, as well as the potential goals of each program. Groups with special needs among the ESRD population are considered, as well as safety, potential adverse events, and adherence to exercise programs. Finally, recommendations for future researches are highlighted.     

Aging and ESRD Demographics: Consequences for the Practice of Dialysis

The disproportionate increase in the prevalence of chronic kidney disease (CKD) and end‐stage renal disease (ESRD) in the elderly is now recognized as a national and global reality. Among the major contributing factors are the aging of the population, a growing prevalence of CKD, greater access to care, and increased comorbidities. The utilization of renal replacement therapy in the geriatric population has concomitantly increased. It is imposing enormous challenges to the practice of ESRD care, the largest of which may be to determine the best application of clinical performance targets to a population with limitations in life expectancy. Concurrently, increased focus on quality of life will be required. The effective dialysis practitioner will need to adapt to the aging ESRD demographics with an increased focus on physical and mental well‐being of the geriatric patient.     

Éducation thérapeutique

Any patient living with a chronic renal disease should be offered counselling, information and educational activities. Teaching and organisational endpoint are critical in order to be able to enlarge educational offer to meet the patient's needs. The healthcare system will also have to build educational programs pooling staff resources because no new financial support has been dedicated to Patient Education in hospitals. The aim of Educational programs is to improve patient's quality of life. Behaviours, professional practices and positions are changing throughout the process of implementing educational activities. Healthcare providers have to gain new skills to deal at the same time with the care and the cure.     

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.     

The direction of end-stage renal disease reimbursement in the United States

In the 1960s, care of the end‐stage renal disease (ESRD) patient changed. Either through transplantation or intermittent hemodialysis ESRD patients were able to live longer. The Gottschalk Committee issued the “Report of the Committee on Chronic Kidney Disease” to the Bureau of Budget. This report established that hemodialysis and kidney transplantation were the standard of care for the treatment of ESRD patients. Section 2991 of the Social Security Amendment of 1972 provided that patients with ESRD who qualified for Medicare were entitled to receive dialysis and/or transplantation nationwide. The first Medicare hearing held in 1975 regarding the Medicare ESRD program found that the cost of the program was much greater than had been predicted in 1972. Ever since 1975, accelerating cost has been a concern of the government. Quality of care for ESRD patients has been a major focus of the renal community and the Centers for Medicare and Medicaid Services (CMS) over the past 10 years. Consensus for entitlement has remained, but the staggering cost of the program as a whole has become a major problem that must be addressed. Since 1978, Congress and the CMS have passed laws and developed demonstration projects to improve quality of care and reduce costs in the Medicare ESRD program. Kt/V, urea reduction ratio (URR), and hemoglobin levels have all improved, but hospital admissions have remained unchanged and mortality rates have increased. Do the renal community and CMS need to rethink how they will improve the quality of care for ESRD patients and reduce costs in the Medicare ESRD program?