Patient and Caregiver Priorities for Outcomes in Peritoneal Dialysis: Multinational Nominal Group Technique Study

Abstract

Background and objectives: The absence of accepted patient-centered outcomes in research can limit shared decision-making in peritoneal dialysis (PD), particularly because PD-related treatments can be associated with mortality, technique failure, and complications that can impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in PD, and to describe the reasons for their choices.

Design, setting, participants, & measurements: Patients on PD and their caregivers were purposively sampled from nine dialysis units across Australia, the United States, and Hong Kong. Using nominal group technique, participants identified and ranked outcomes, and discussed the reasons for their choices. An importance score (scale 0-1) was calculated for each outcome. Qualitative data were analyzed thematically.

Results: Across 14 groups, 126 participants (81 patients, 45 caregivers), aged 18-84 (mean 54, SD 15) years, identified 56 outcomes. The ten highest ranked outcomes were PD infection (importance score, 0.27), mortality (0.25), fatigue (0.25), flexibility with time (0.18), BP (0.17), PD failure (0.16), ability to travel (0.15), sleep (0.14), ability to work (0.14), and effect on family (0.12). Mortality was ranked first in Australia, second in Hong Kong, and 15th in the United States. The five themes were serious and cascading consequences on health, current and impending relevance, maintaining role and social functioning, requiring constant vigilance, and beyond control and responsibility.

Conclusions: For patients on PD and their caregivers, PD-related infection, mortality, and fatigue were of highest priority, and were focused on health, maintaining lifestyle, and self-management. Reporting these patient-centered outcomes may enhance the relevance of research to inform shared decision-making.

Keywords: Caregivers; Decision Making; Life Style; Outcomes; Patient Participation; Self-Management; Wakefulness; blood pressure; peritoneal dialysis; quality of life.

Graphical abstract

Figure 1.

Overall importance scores for all outcomes across groups (SEM bars).

Figure 2.

Thematic schema depicting themes underpinning rankings of outcomes. Patients/caregivers gave higher priority to lifestyle and functional outcomes, and morbidity and mortality, compared with biochemical parameters and symptoms. The reasons for their prioritization are indicated in the themes. The theme of “requiring constant vigilance” contributed to higher prioritization of outcomes related to morbidity and mortality (e.g., PD infection), lifestyle and function (e.g., flexibility with time), as well as some biochemical parameters (e.g., potassium). “Current and impending relevance” contributed to the prioritization of outcomes relating to symptoms (e.g., sexual function, fatigue, depression), whereas the theme of “beyond control and responsibility” explained the lower prioritizations of morbidity and mortality-related outcomes, as patients felt some outcomes were inevitable (e.g., kidney function, mortality). “Maintaining role and social functioning” related to lifestyle and functional outcomes, such as the ability to work and travel. “Serious cascading consequences on health” justified the high prioritization of morbidity and mortality outcomes.