When All You Have Is a Hammer: The Need for Tools to Define and Apply Patient-Centered Outcomes in Hemodialysis

Nephrologists commonly provide high-quality, life-saving, and appropriate care to complex patients. Tools of the trade include specialized knowledge in the pathophysiology of kidney diseases and related metabolic disturbances; experience with how, when, and where to provide RRT; and pharmacologic agents to address kidney disease complications and reduce risk for certain clinical outcomes. This approach relies on adherence to disease-specific guideline recommendations and has the potential to reduce adverse outcomes, limit patient variation in treatment and outcomes, and extend life for many patients (1). In contrast, a patient-centered approach to health care incorporates patients’ preferences, priorities, and values into decision making and may sometimes contradict guideline-driven care (2,3). Patient-centered outcomes are those important to individual patients, not only those relevant to the disease of interest (4). The necessary tools for providing patient-centered care include the ability to interpret and apply evidence to individual patients and the communication skills necessary to discuss tradeoffs (5). In nephrology, shifting from a purely disease-oriented approach to a more patient-centered approach may be facilitated by a better understanding of the unique challenges that nephrologists face implementing patient-centered outcomes into the care of patients on hemodialysis (6,7).

In this issue of the Clinical Journal of the American Society of Nephrology (CJASN), Tong et al. (8) report findings from a large qualitative study designed to elicit nephrologists’ perspectives on defining and applying patient-centered outcomes in hemodialysis. Nephrologists with experience caring for patients on hemodialysis were purposively recruited across nine countries to participate in face to face, semistructured interviews. In-depth interviews focused on defining patient-centered outcomes and describing their experiences and challenges applying patient-centered outcomes in clinical practice. Thematic analysis was used to group concepts into themes and develop an overarching thematic schema.

The authors identified five major themes. They grouped nephrologists’ definitions of patient-centered outcomes into two themes related to (1) addressing patients’ priorities and (2) optimizing their wellbeing. Themes regarding the challenges of implementing patient-centered outcomes were related to (1) the extensive heterogeneity of patient priorities and experiences, (2) the limitations of current clinical approaches (i.e., clinically hamstrung), and (3) health system–level barriers. Tong et al. (8) provided rich, contextualized quotes that highlight the struggles that arise when nephrologists consider patient priorities or overall wellbeing but question their own ability to influence outcomes not mechanistically tied to kidney failure. As well, nephrologists confront many barriers to deviation from clinical practice guidelines or standard policies. The authors were appropriately cautious in describing the clinical implications of these findings, because not all nephrologists may agree that a patient-centered approach to care is superior to traditional disease-oriented care.

This study provided an outstanding example of the potential role of qualitative approaches in kidney disease research and can help expand the CJASN readership’s familiarity with these methods. In contrast to quantitative research, the aim of a qualitative study is often to obtain depth and detail over breadth, explore variation rather than maximize generalizability, or provide context rather than infer causality (9). Because the aim of qualitative research is different, the theoretical frameworks, the methods, the analytic approaches, and the presentation of results are accordingly different. Readers of qualitative research reports should be cautious applying standard clinical epidemiology review criteria when assessing study validity (for example, when considering participant recruitment and evaluation of bias). In qualitative studies, select participants may be recruited with the purpose (i.e., purposive recruitment) of ensuring participant experience with the study focus, maximizing variation in life experiences, or studying difficult to reach populations. In qualitative research, blinding or masking is not possible or wanted. Investigators often have an ongoing and iterative interaction with the study data. Evaluation of bias in this scenario requires investigator reflexivity, in which investigators systematically reflect on their personal beliefs, understandings, and experience as they relate to the study design and analysis and provide this information to readers (9,10).

The study by Tong et al. (8) also provided new insight into the challenges that nephrologists face implementing patient-centered outcomes into clinical practice. Key findings of the study suggested a mismatch between the tools of nephrology and the tools necessary for patient-centered care. Nephrologists described the lack of validated instruments to measure the broad spectrum of patient-centered outcomes. In some cases, they were concerned that it would not be possible for standardized measures to capture meaningful individual heterogeneity at the population level. Even when improving patient-centered outcomes was deemed important, nephrologists voiced frustrations with the available treatments to make a difference, recognizing that changes to dialysis or medication regimens were unlikely to affect quality of life or functioning. Additionally, nephrologists may not have the necessary skills and capacity to provide patient-centered care. Nephrologists’ predilection to hunt for distinct pathophysiologic mechanisms underlying symptoms may come up empty when outcomes are complex and multifactorial in etiology. Nephrologists also reported lack of confidence in their ability to communicate risk without frightening patients or discuss the inherent tradeoffs (i.e., paradoxical dilemmas) that occur when individualizing treatment plans as a major barrier.

Findings of this study point to several possible solutions that should be tested in future research. One step described by study participants is to further develop and validate instruments that capture patient-centered outcomes. In their discussion, the authors highlighted ongoing work in this area. Disease-specific measures that consider the unique experiences and symptoms associated with kidney failure and hemodialysis are important. However, nephrologists could also look to other fields, such as geriatrics, when assessing possible patient-reported outcome measures. For example, measures of community mobility and social participation—such as life-space mobility, which captures the distance, frequency, and need for assistance as older adults move through their environment—may be meaningful for both younger and older patients on hemodialysis (11).

Another strategy that may allow nephrologists to bolster their toolbox for addressing patient-centered outcomes for patients on hemodialysis is to expand interdisciplinary care teams. Although this approach was not explicitly described by participants in this study, interdisciplinary teamwork may be effective for patients with complex medical problems, multifactorial symptoms, and challenging social situations. Delegation of tasks across a team may help reduce the professional deficiency burden described by nephrologists. Hemodialysis providers are already experienced working in teams that include nurses, social workers, and dietitians among others, but expanding and tailoring teams to address individual patient needs may be necessary. For example, additional team members from physical therapy, occupational therapy, pharmacy, palliative care, geriatrics, and psychology could be included as well as family caregivers and patient navigators. As one example, partnership models with geriatric medicine have been piloted and may allow nephrologists to focus on providing high-quality renal care and rely on other team members to identify and address outcomes, such as cognitive and functional decline (12). Future research is necessary to determine how best to provide interdisciplinary care, which patients to target, and how to do this in a cost-effective manner.

Lastly, findings from this study suggested that nephrologists may question their ability to communicate prognosis and discuss tradeoffs. In some cases, they may avoid difficult conversations, which has been shown in prior studies (13). Because communication and engaging in shared decision making are key tools for providing patient-centered care and ultimately addressing patient-centered outcomes, improving these skills may be a key strategy to overcome the barriers reported here. Opportunities for nephrologists and trainees to develop, practice, and role model effective patient-centered communication may be needed. Communication skills training has been developed for nephrologists but may need to be further disseminated and studied (14,15).

As with this study, qualitative research can be helpful for capturing an insider perspective to a difficult problem. If nephrologists are only equipped with standard tools of the trade, patients may be primarily viewed as a collection of disease-specific parameters rather than as persons with individual preferences and priorities for treatment and care. Identifying challenges that nephrologists face implementing patient-centered outcomes into care for patients on hemodialysis is a necessary step for supplementing the nephrologist’s toolbox and overcoming these barriers. The question remains as to how to provide nephrologists with some of the tools necessary to provide more patient-centered care without diminishing or distracting from what nephrologists do best.

Disclosures

Funding provided through a Career Development Award from the US Department of Veterans Affairs (IK2CX000856) to C.B.B. and an award from the Extramural Grant Program by Satellite Healthcare, a not-for-profit renal care provider, to L.P.