Quality of life in older adults receiving hemodialysis: a qualitative study

PURPOSE: Patient 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. METHODS: We 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. RESULTS: Among 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. CONCLUSION: Novel instruments are likely needed to elicit the dominant themes of having physical well-being and having social support identified by older adults receiving dialysis. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11136-019-02349-9) contains supplementary material, which is available to authorized users.