Patient and caregiver priorities for outcomes in peritoneal dialysis: Multinational Nominal Group Technique Study

Karine E. Manera, David W. Johnson, Jonathan C. Craig, Jenny I. Shen, Lorena Ruiz, Angela Yee Moon Wang, Terence Yip, Samuel K.S. Fung, Matthew Tong, Achilles Lee, Yeoungjee Cho, Andrea K. Viecelli, Benedicte Sautenet, Armando Teixeira-Pinto, Edwina Anne Brown, Gillian Brunier, Jie Dong, Tony Dunning, Rajnish Mehrotra, Saraladevi NaickerRoberto Pecoits-Filho, Jeffrey Perl, Martin Wilkie, Allison Tong

Research output: Contribution to journalArticle

33 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)74-83
Number of pages10
JournalClinical Journal of the American Society of Nephrology
Volume14
Issue number1
DOIs
Publication statusPublished - 7 Jan 2019
Externally publishedYes

Keywords

  • outcomes
  • caregivers
  • blood pressure
  • quality of life
  • self-management
  • decision making
  • patient participation
  • peritoneal dialysis
  • wakefulness
  • life style

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