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

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.

Evaluation of physical symptoms in patients on peritoneal dialysis.

Introduction. Little is known about physical symptoms in peritoneal dialysis (PD) Patients. This study aims to determine the prevalence of symptoms (general and abdominal) in PD patients. Methods. A cross-sectional study, with subsequent followup, using an author-designed 21 symptoms questionnaire (15 nonabdominal and 6 abdominal). Each symptom was assessed on a scale 0-3 for severity (none-severe) and frequency (never-every day). Results. We studied 41 patients, mean age 60 ± 15 years, 56% male, 19.5% diabetics, and 51.5% on APD. Mean number of symptoms was 9.5 ± 3.9 and total symptoms score was 28.5 ± 12 with abdominal scores of 6.4 ± 4.8. Most frequent symptoms were lack of energy, itching, cramps, poor sleep, and loss of appetite. A second evaluation in 20 patients disclosed no statistical difference between the first and second assessments, or between subgroups. Cramps were the only symptoms which decreased over time (P = 0.120). Lack of energy did not correlate with haemoglobin, neither did itching with phosphate level. Conclusions. Physical symptoms are frequent and troublesome; they relate to advanced kidney disease and not specifically to PD. Symptoms remain stable over time and do not appear to relate to dialysis parameter markers.