Most older adults receiving maintenance dialysis have limited life expectancy, multiple chronic conditions, and functional impairment [1
]. Few interventions have been demonstrated to lengthen life or reduce debility in this population, making efforts to assess and optimize quality of life especially important [4
The importance of quality of life assessment has been embraced by dialysis providers and regulatory bodies as well as patient organizations. For example, the Centers for Medicare and Medicaid Services (CMS) require annual assessment of quality of life, and the instrument commonly used is the Kidney Disease Quality of Life 36-item instrument (KDQOL-36), a shorter form of the original KDQOL. Although more than 25% of patients receiving dialysis is aged ≥ 75 years—the fastest growing group of new dialysis patients, only 10% of the patients who provided input on the KDQOL instrument were in this age group [5
]. Because older adults receiving dialysis differ from their younger counterparts in important ways, it is unclear whether this instrument reflects domains of quality of life that are important to these older patients. For example, older adults receiving dialysis tend to have more chronic conditions than their younger counterparts, a higher symptom burden, are less likely to be employed, have a shorter life expectancy, and have a higher prevalence of geriatric syndromes including frailty, functional impairment, and cognitive impairment [7
]. We have shown that these differences do not affect the psychometric properties of the KDQOL-36 in older adults [9
]; however, they likely contribute to how older adults receiving dialysis view quality of life.
Studies of quality of life in non-dialysis populations have demonstrated that older adults prioritize different domains than younger adults do. In particular, older adults prioritize physical, psychological, social, and cognitive well-being, physical environment, spirituality, and end-of-life experiences [10
]. As a result, quality of life instruments specific to older adults have been created, such as the WHOQOL-OLD [13
]. Unlike older adults without renal failure, older adults receiving dialysis have additional unique life experiences that may impact their values, such as time required at a dialysis unit per week and post-dialysis fatigue. Therefore, it is not clear if quality of life instruments designed for older adults, such as the WHOQOL-OLD module, or the KDQOL-36, designed for younger patients on dialysis, encompass what matters most to those older adults receiving dialysis.
We conducted a qualitative study among older adults receiving maintenance hemodialysis to identify quality of life themes that matter most to older adults receiving dialysis and identify the extent to which existing quality of life instruments, specifically the KDQOL-36 and WHOQOL-OLD, overlap with those important themes. Our goal, consistent with the Institute for Healthcare Improvement’s 4 M Framework for creating age-friendly healthcare systems [14
], was to ensure that we are able to capture what “Matters Most” to this clinically complex population.
In this qualitative study, we sought to identify the core values and essential aspects of quality of life among older adults receiving maintenance hemodialysis. Two dominant themes emerged from interviews with study participants related to quality of life: having physical well-being and having social support. These themes appeared to be relevant regardless of patients’ level of frailty, but how patients thought about physical well-being and social support appeared to be a dynamic property and varied according to their specific circumstances. We identified only limited overlap with existing quality of life instruments, KDQOL-36 and WHOQOL-OLD. Most subthemes identified were not consistently represented in those instruments, and there was no representation of subthemes related to maintaining physical health, being alive, and having practical social support. These findings highlight the need for a novel approach to quality of life assessment in older adults receiving maintenance hemodialysis that could be used to shape care, direct quality improvement efforts and assess the effect of interventions intended to improve quality of life.
This study identified quality of life priorities that are both similar and different from prior studies. Consistent with an international Delphi study of patients receiving dialysis [28
], older adults interviewed for this study wanted to have more energy to do things and wanted to spend less time on dialysis. The value placed on staying alive and maintaining health among participants in this study is also consistent with the results of an ethnographic analysis that describes how patients viewed dialysis as a responsibility to continue despite worsening physical health [29
]. On the other hand, unlike earlier work conducted among a cohort of adults with organ failure among whom end-of-life concerns figured prominently [10
], most participants in this study valued “staying alive” and did not express concerns about how their life would end. While this may be explained by selection bias since all the prevalent dialysis patients in this study had already chosen dialysis over palliative care, this finding may also reflect that many study participants understood that dialysis extended their lives and if their health were to worsen then their responses may shift to discussions around end of life [30
]. Beyond this unexpected finding, our study also adds to the literature by emphasizing the high value of social support to older adults receiving dialysis. Social support, along with social participation and relationships, is considered part of social well-being, an important domain of quality of life for older adults [12
]. When social well-being is limited, there is increased likelihood for declining health status [32
]. Therefore, close attention to social support is warranted as it is both valuable to the patient and to their health.
There was limited overlap between dominant themes identified in this study and existing instruments commonly used to assess quality of life in patients on dialysis and in older adults. While this finding highlights a limitation in our delivery of patient-centered care, it also introduces a potential opportunity to incorporate additional instruments for assessing those quality of life domains. Dialysis social workers who typically administer the KDQOL-36 perform additional routine assessments of physical limitations and psychosocial status. These assessments can uncover decrements in physical well-being and social support and be used to facilitate discussions at multidisciplinary dialysis unit rounds. A potential step forward could be adding those routine assessments to the KDQOL-36 as part of the CMS requirement for annual health-related quality of life assessment [34
]. Another option is to incorporate validated items from the longer KDQOL-Short Form that describe how much time and support a patient receives from family and friends [35
]. Beyond the KDQOL, the Medical Outcomes Study Social Support instrument may have utility as it includes 19 items that assess emotional, tangible support and social interactions, all themes identified in this study [36
]. Social support could also be assessed through the Lubben Social Network Scale developed for older adults or social health items developed by the Patient-Reported Outcomes Measurement Information System (PROMIS) [37
]. Such PROMIS item banks are also available for assessing fatigue and physical function [39
]. While these alternative measures may be relatively quick to implement and enhance clinical practice in the short-term, the ideal solution is the development of a novel instrument specific to older adults receiving dialysis to ensure appropriateness of quality of life assessment.
Consistent with other literature on this relationship between frailty and quality of life, we found frail participants expressed a limited scope in desired activities and goals to achieve quality of life compared to non-frail participants [25
]. As these perspectives can inform clinical decision-making, it is plausible that routine frailty assessment could improve the frequency and quality of goals of care discussions; these discussions can often be hard for patients to initiate [29
]. Evidence suggests that frail older adults with good social support report better quality of life [41
]. Novel social support interventions to target practical and emotional social support may help older adults receiving dialysis maintain or improve quality of life, especially for patients with declining health and/or limited family/friend interactions. For example, chronic disease self-management and geriatric assessment models of care that have been associated with improved self-efficacy and practical social support in older adults may yield improvements in quality of life in this population [42
]. These hypotheses should be tested in future research.
Although we were able to obtain rich information on quality of life from older adults with considerable experience of life undergoing dialysis, our study has some limitations. Our study sample was diverse in frailty status and cognitive function. However, a more diverse sample will allow for further clarification of quality of life domains important to long-term care residents and older adults who recently started receiving dialysis. We recruited all participants from one geographic region and no participants identified as part of Hispanic ethnic group. To establish adequate content validity for a new quality of life instrument for older adults receiving dialysis, a larger more diverse sample would need to be engaged for concept elicitation and cognitive interviewing. Although most participants agreed to have an interview during a dialysis session, some responses may have been restrained because of privacy concerns and/or social desirability bias.
In summary, this qualitative study of quality of life in older adults receiving maintenance hemodialysis highlights the importance and intertwined nature of having physical well-being and having social support. These themes and their subthemes are not well represented by existing quality of life instruments. These findings suggest the need to develop new instruments and augment existing instruments to assess quality of life among older adults receiving maintenance dialysis. Broadly, these findings imply that older adults with chronic conditions have unique values in regards to quality of life which should be considered in both clinical practice and research.
The authors acknowledge Ann M. O’Hare for her critical review of manuscript. Research reported in this publication was supported by the National Institute on Aging [Claude D. Pepper Older Americans Independence Center (P30 AG028716), GEMSSTAR program R03 AG050834, and K24 AG049077-01A1, K76AG059930] and the National Center for Advancing Translational Sciences (KL2TR002554 and UL1TR002378) of the National Institutes of Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Research was also supported by the T. Franklin Williams Scholarship Award (funding provided by Atlantic Philanthropies, Inc., the John A. Hartford Foundation, the Alliance for Academic Internal Medicine-Association of Specialty Professors, and the American Society of Nephrology Foundation for Kidney Research). This work was supported by Grant 2015207 from the Doris Duke Charitable Foundation.
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