Establishing a core outcome measure for life participation in patients receiving peritoneal dialysis: A Standardised Outcomes in Nephrology–Peritoneal Dialysis consensus workshop report

Melissa S. Cheetham, Martin Wilkie, Fiona Loud, Karine E. Manera, Angela Ju, Ana Figueiredo, Janine Farragher, Helen Hurst, Sarbjit V. Jassal, Rajnish Mehrotra, Rachael L. Morton, Daniel Schwartz, Jenny I. Shen, Rachael Walker, Yeoungjee Cho, David W. Johnson, Jonathan C. Craig, Samaya Anumudu, Amanda Baumgart, Andrea Matus GonzalezNicole Scholes-Robertson, Andrea K. Viecelli, Allison Tong, On behalf of the SONG-PD Life Participation Workshop Investigators, Peter Marshall

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)

Abstract

Background: Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD. 

Methods: Online consensus workshop to identify the essential characteristics of life participation as a core outcome, with the goal of establishing a patient-reported outcome measure for use in all trials in patients receiving PD. Thematic analysis of transcripts was performed. 

Results: Fifty-five participants, including 17 patients and caregivers, from 15 countries convened via online videoconference. Four themes were identified: reconfiguring expectations of daily living (accepting day-to-day fluctuation as the norm, shifting thresholds of acceptability, preserving gains in flexibility and freedom), ensuring broad applicability and interpretability (establishing cross-cultural relevance, incorporating valued activities, distinguishing unmodifiable barriers to life participation), capturing transitions between modalities and how they affect life participation (responsive to trajectory towards stable, reflecting changes with dialysis transitions) and maximising feasibility of implementation (reducing completion burden, administrable with ease and flexibility). 

Conclusions: There is a need for a validated, generalisable outcome measure for life participation in patients receiving PD. Feasibility, including length of time to complete and flexible mode of delivery, are important to allow implementation in all trials that include patients receiving PD.

Original languageEnglish
Pages (from-to)562-570
Number of pages9
JournalPERITONEAL DIALYSIS INTERNATIONAL
Volume42
Issue number6
Early online date10 May 2022
DOIs
Publication statusPublished - Nov 2022

Keywords

  • Core outcome measure
  • life participation
  • patient-reported outcome measures
  • peritoneal dialysis
  • quality of life

Fingerprint

Dive into the research topics of 'Establishing a core outcome measure for life participation in patients receiving peritoneal dialysis: A Standardised Outcomes in Nephrology–Peritoneal Dialysis consensus workshop report'. Together they form a unique fingerprint.

Cite this