Abstract
PurposePatient priorities for quality of life change with age. We conducted a qualitative study to identify quality of life themes of importance to older adults receiving dialysis and the extent to which these are represented in existing quality of life instruments.MethodsWe conducted semi-structured interviews with 12 adults aged ≥ 75 years receiving hemodialysis to elicit participant perspectives on what matters most to them in life. We used framework analysis methodology to process interview transcripts (coding, charting, and mapping), identify major themes, and compare these themes by participant frailty status. We examined for representation of our study’s subthemes in the Kidney Disease Quality of Life (KDQOL-36) and the World Health Organization Quality of Life for Older Adults (WHOQOL-OLD) instruments.ResultsAmong the 12 participants, average age was 81 (4.2) years, 7 African-American, 6 women, and 6 met frailty criteria. We identified two major quality of life themes: (1) having physical well-being (subthemes: being able to do things independently, having symptom control, maintaining physical health, and being alive) and (2) having social support (subthemes: having practical social support, emotional social support, and socialization). Perspectives on the subthemes often varied by frailty status. For example, being alive meant surviving from day-to-day for frail participants, but included a desire for new life experiences for non-frail participants. The majority of the subthemes did not correspond with domains in the KDQOL-36 and WHOQOL-OLD instruments.ConclusionNovel instruments are likely needed to elicit the dominant themes of having physical well-being and having social support identified by older adults receiving dialysis.
Highlights
Most older adults receiving maintenance dialysis have limited life expectancy, multiple chronic conditions, and functional impairment [1,2,3]
We have shown that these differences do not affect the psychometric properties of the KDQOL-36 in older adults [9]; they likely contribute to how older adults receiving dialysis view quality of life
We report our study design and findings according to the consolidated criteria for reporting qualitative research (COREQ) checklist [16]
Summary
Most older adults receiving maintenance dialysis have limited life expectancy, multiple chronic conditions, and functional impairment [1,2,3]. The importance of quality of life assessment has been embraced by dialysis providers and regulatory bodies as well as patient organizations. 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. 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, 8]. We have shown that these differences do not affect the psychometric properties of the KDQOL-36 in older adults [9]; they likely contribute to how older adults receiving dialysis view quality of life
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