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


Journal

Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association
ISSN: 1460-2385
Titre abrégé: Nephrol Dial Transplant
Pays: England
ID NLM: 8706402

Informations de publication

Date de publication:
26 04 2021
Historique:
received: 21 01 2020
accepted: 27 07 2020
pubmed: 29 12 2020
medline: 23 7 2021
entrez: 28 12 2020
Statut: ppublish

Résumé

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. 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. 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. 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.

Sections du résumé

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.

Identifiants

pubmed: 33367781
pii: 6050589
doi: 10.1093/ndt/gfaa244
pmc: PMC8075374
doi:

Types de publication

Journal Article Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't Systematic Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

890-901

Subventions

Organisme : NIDDK NIH HHS
ID : K23 DK103972
Pays : United States

Informations de copyright

© The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

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Auteurs

Karine E Manera (KE)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Angela Ju (A)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Amanda Baumgart (A)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Elyssa Hannan (E)

Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Wenjing Qiao (W)

Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Martin Howell (M)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Melissa Nataatmadja (M)

Sunshine Coast Hospital and Health Service, Sunshine Coast University Hospital, Kawana Waters, QLD, Australia.

Martin Wilkie (M)

Department of Nephrology, Sheffield Teaching Hospital NHS Foundation Trust, Sheffield, UK.

Fiona Loud (F)

Kidney Care UK, Alton, UK.

Daniel Schwartz (D)

Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.

Helen Hurst (H)

Manchester Academic Health Science Centre, Manchester University NHS Foundation Trust, University of Manchester, Manchester, UK.

Sarbjit Vanita Jassal (SV)

Division of Nephrology, Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada.

Ana Figueiredo (A)

School of Science and Life, Nursing School Pontifical Catholic University of Rio Grande do Sul, Porto Alegre, Brazil.

Rajnish Mehrotra (R)

Kidney Research Institute and Harborview Medical Center, Division of Nephrology/Department of Medicine, University of Washington, Seattle, WA, USA.

Jenny Shen (J)

Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA, USA.

Rachael L Morton (RL)

NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, Australia.

Thyago Moraes (T)

School of Medicine, Pontifícia Universidade Católica do Paraná, Curitiba, Paraná, Brazil.

Rachael Walker (R)

School of Nursing, Eastern Institute of Technology, Hawke's Bay, New Zealand.

Catherine Cheung (C)

Fraser Health Authority, British Columbia, Canada.

Janine F Farragher (JF)

Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.

Jonathan Craig (J)

College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia.

David W Johnson (DW)

Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia.
Australasian Kidney Trials Network, Centre for Health Services Research, University of Queensland, Brisbane, QLD, Australia.
The Centre for Kidney Disease Research, University of Queensland, Brisbane, QLD, Australia.

Allison Tong (A)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

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