What Is the “Maintenance” in Maintenance Dialysis?

I don’t know what to do to guarantee the quality of dialysis in the future. It’s so intimately tied to the motivation and the personality of the people running it. I think dialysis could deteriorate very badly…It takes devotion of the highest order to make this thing work.

Belding Scribner¹

In a 1965 interview, Dr Belding Scribner—the father of maintenance dialysis—shared footage of Clyde Shields, his first patient to successfully undergo regular outpatient dialysis treatments. Dr Scribner proclaimed, “he is fully rehabilitated to his job as a machinist…This case together with the 15 other patients now under treatment in Seattle proves that the artificial kidney can replace the life-sustaining functions of the normal human kidney.”² Mr Shields’ image served as the vision for what maintenance dialysis should achieve and evidence to support efforts to increase access to dialysis. In 1972, the US Congress passed Public Law 92–603 to establish public funding for dialysis, thereby making the procedure widely available; many other countries quickly following suit to enact similar laws.

However, only 5 years later, Dr Scribner began to voice misgivings about dialysis and concerns about the medical, physical, psychological, and social course of many of the patients now on dialysis but “for whom dialysis was of marginal value.”^1,3 He cautioned against “complacency” in dialysis care among the future generations of his nephrology colleagues and spent his career campaigning for advancements in dialysis in hopes of giving patients “the gift of life” and every chance of maintaining “normal lives as productive working members of society.”¹

In this issue of AJKD, Brown et al⁴ provide a window into the global state of dialysis care now, 6 decades after outpatient maintenance dialysis first began. Authors used data from the Dialysis Outcomes and Practice Patterns Study (DOPPS) and Peritoneal Dialysis Outcomes and Practice Patterns Study (PDOPPS) to examine quality of life and psychosocial function of patients receiving maintenance dialysis.⁵ The DOPPS and PDOPPS are international prospective cohort studies that collect rich data on patient-reported outcomes of patients drawn from a nationally representative sample of dialysis units in each participating country. Thus, these data fill a crucial information gap not covered by most national registries of patients on dialysis. By providing a comprehensive picture of patient-reported outcomes for international dialysis populations, the findings move the nephrology community beyond studies within a single dialysis center or large dialysis organization.

The current study analyzed responses to annually administered questionnaires from a subset of 4,544 patients on in-center hemodialysis (HD) and 3,227 patients on peritoneal dialysis (PD) in the United States, Canada, United Kingdom, Australia/New Zealand, and Japan. The primary outcomes of interest were largely derived from patient responses to the Kidney Disease Quality of Life Short Form, including aggregate measures of physical (physical component score [PCS]) and mental (mental component summary [MCS]) well-being, perceived burden of kidney disease, and employment status. Depressive symptoms were also ascertained from patient responses to the Center for Epidemiological Studies Depression Scale. As their primary analysis, the authors performed a cross-sectional analysis of factors associated with baseline values of patient-reported outcomes. For patients who completed 2 consecutive questionnaires (2,062 patients on HD and 1,040 patients on PD), the authors also examined change in responses over time (approximately 1 year).

The authors found that patients on both HD and PD across all countries reported experiencing substantial personal and psychosocial hardships. Overall, 14%–39% of patients reported scores in the highest quartile of disease burden, 54%–91% in the lower quantile of physical well-being, and 44%–65% in the lower quantile of mental well-being. Additionally, 32%–80% of patients reported being unemployed and 28%–45% reported having depressive symptoms. Among a broad array of patient factors examined, functional status and country of origin were the most strongly associated with patient-reported outcomes for patients on both HD and PD. That is, patients with the lowest quartile of functional status scores had worse PCS and MCS scores, experienced greater disease burden, were more often unemployed, and reported a higher degree of depressive symptoms as compared with patients with higher functional status. As compared with patients in other countries, US patients had some of the worst physical well-being scores and the highest rates of unemployment and diagnosis of depression. Among patients with complete longitudinal data on outcome measures, changes in measures were negligible.

This work adds to the growing body of literature on the illness experience of patients on dialysis and demonstrates how patients like Clyde Shields are the exception and not the rule among patients currently on dialysis, particularly in this country. The study findings demonstrate that the status quo of dialysis care is suboptimal and prompts the question of what changes to dialysis practices are needed to enable patients on dialysis to live full lives.

First, it is time that we adopt a more patient-centered mindset when caring for patients on dialysis. Other studies indicate that while staying alive is important to patients, their independence and how they spend their time when they are not on dialysis may be of greater value to most.^6,7 However, nephrologists are more attuned to addressing patients’ biomedical markers of disease activity and risk factors for mortality than patients’ personal goals and function.⁸ The current framework for clinical practice guidelines for and reimbursement of dialysis care is also misaligned with our patients’ priorities and is defined in large part by the attainment of target parameters of dialysis adequacy, anemia management, mineral metabolism, and vascular access rather than improvement in patients’ function, alleviation of symptoms, and social rehabilitation.⁹

Second, innovations that can support patient-centered approaches to dialysis care are needed. Many patients and clinicians alike are dissatisfied with the one-size-fits-all approach to dialysis care. To this end, there are clinical and research teams currently investigating a number of alternative strategies to dialysis focused on supporting patients’ goals and priorities while keeping them safe. For instance, incremental dialysis uses shorter and less frequent dialysis treatments for patients starting dialysis who might still have some residual kidney function and increases the dialysis dose slowly over time as patients’ needs increase.¹⁰ With palliative dialysis, the dialysis prescription is targeted at safeguarding quality of life and minimizing psychosocial burden and symptoms instead of maximizing life expectancy.¹¹ Concurrent hospice and dialysis is designed to address the end-of-life care needs of dying patients in whom dialysis is used strictly to alleviate symptoms.¹² Short-term trials of dialysis with planned initiation using hemodialysis catheters support patients who are unsure about whether dialysis is right for them until after they try therapy.¹³ Staff-assisted home dialysis supports frail, dependent patients with conducting dialysis at home on their own time and terms so that they can continue to meaningfully participate in their lives.¹⁴ Self-dialysis units empower patients to manage their own in-center hemodialysis treatments and can give patients greater control of their experience on dialysis.¹⁵

It should go without saying that to improve patient-reported outcomes among patients on maintenance dialysis, it will require patient-centered thinking and ingenuity. Brown et al remind us that the precious opportunity afforded by dialysis requires renewed vigilance from nephrologists to reexamine our approaches to caring for patients on dialysis and what we hope to maintain with maintenance dialysis in our patients.