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 patientcentered outcomes may enhance the relevance of research to inform shared decision-making. was to identify patient and caregiver priorities for outcomes in PD, and to elicit the reasons underpinning these priorities. The selection of outcomes for research that are meaningful to patients on PD will ultimately result in a more patient-centered research agenda for these patients.
Materials and Methods
Participant Recruitment and SelectionWe recruited patients on PD and their caregivers (i.e., a family member or friend involved in providing support and care) from three centers in Australia (Sydney, Melbourne. and Brisbane), one center in the United States (Los Angeles), and five centers in Hong Kong. These countries were chosen on the basis of geographical locality of the investigator team and to capture a diverse range of perspectives from patients and caregivers located in countries with different PD policies We applied purposive sampling to obtain a wide range of demographic (age, sex) and clinical characteristics (continuous ambulatory peritoneal dialysis [CAPD] versus automated PD, dialysis vintage, complications).