Patient-reported outcome measures for life participation in peritoneal dialysis: a systematic review

Karine E. Manera, Angela Ju, Amanda Baumgart, Elyssa Hannan, Wenjing Qiao, Martin Howell, Melissa Nataatmadja, Martin Wilkie, Fiona Loud, Daniel Schwartz, Helen Hurst, Sarbjit Vanita Jassal, Ana Figueiredo, Rajnish Mehrotra, Jenny Shen, Rachael L. Morton, Thyago Moraes, Rachael Walker, Catherine Cheung, Janine F. FarragherJonathan Craig, David W. Johnson, Allison Tong

Research output: Contribution to journalArticlepeer-review

Abstract

BACKGROUND: Patients receiving peritoneal dialysis (PD) endure an ongoing regimen of daily fluid exchanges and are at risk of potentially life-threatening complications and debilitating symptoms that can limit their ability to participate in life activities. The aim of the study was to identify the characteristics, content and psychometric properties of measures for life participation used in research in PD. METHODS: We searched MEDLINE, Embase, PsychInfo, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and the Cochrane Central Register of Controlled Trials from inception to May 2020 for all studies that reported life participation in patients on PD. The characteristics, dimensions of life participation and psychometric properties of these measures were extracted and analyzed. RESULTS: Of the 301 studies included, 17 (6%) were randomized studies and 284 (94%) were nonrandomized studies. Forty-two different measures were used to assess life participation. Of these, 23 (55%) were used in only one study. Fifteen (36%) measures were specifically designed to assess life participation, while 27 (64%) measures assessed broader constructs, such as quality of life, but included questions on life participation. The 36-Item Short Form Health Survey and Kidney Disease Quality of Life Short Form were the most frequently used measures [122 (41%) and 86 (29%) studies, respectively]. Eight (19%) measures had validation data to support their use in patients on PD. CONCLUSIONS: The many measures currently used to assess life participation in patients receiving PD vary in their characteristics, content and validation. Further work to pilot and validate potential measures is required to establish a core patient-reported outcome measure to assess life participation in patients receiving PD.

Original languageEnglish
Pages (from-to)890-901
Number of pages12
JournalNephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association
Volume36
Issue number5
DOIs
Publication statusPublished - May 2021

Keywords

  • life participation
  • outcome measures
  • peritoneal dialysis

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