Karine E Manera1,2, Angela Ju1,2, Amanda Baumgart1,2, Elyssa Hannan2, Wenjing Qiao2, Martin Howell1,2, Melissa Nataatmadja3, Martin Wilkie4, Fiona Loud5, Daniel Schwartz6, Helen Hurst7, Sarbjit Vanita Jassal8, Ana Figueiredo9, Rajnish Mehrotra10, Jenny Shen11, Rachael L Morton12, Thyago Moraes13, Rachael Walker14, Catherine Cheung15, Janine F Farragher16, Jonathan Craig17, David W Johnson18,19,20, Allison Tong1,2. 1. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia. 2. Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia. 3. Sunshine Coast Hospital and Health Service, Sunshine Coast University Hospital, Kawana Waters, QLD, Australia. 4. Department of Nephrology, Sheffield Teaching Hospital NHS Foundation Trust, Sheffield, UK. 5. Kidney Care UK, Alton, UK. 6. Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada. 7. Manchester Academic Health Science Centre, Manchester University NHS Foundation Trust, University of Manchester, Manchester, UK. 8. Division of Nephrology, Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada. 9. School of Science and Life, Nursing School Pontifical Catholic University of Rio Grande do Sul, Porto Alegre, Brazil. 10. Kidney Research Institute and Harborview Medical Center, Division of Nephrology/Department of Medicine, University of Washington, Seattle, WA, USA. 11. Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA, USA. 12. NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, Australia. 13. School of Medicine, Pontifícia Universidade Católica do Paraná, Curitiba, Paraná, Brazil. 14. School of Nursing, Eastern Institute of Technology, Hawke's Bay, New Zealand. 15. Fraser Health Authority, British Columbia, Canada. 16. Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada. 17. College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia. 18. Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia. 19. Australasian Kidney Trials Network, Centre for Health Services Research, University of Queensland, Brisbane, QLD, Australia. 20. The Centre for Kidney Disease Research, University of Queensland, Brisbane, QLD, Australia.
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.
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.
Authors: N K Aaronson; S Ahmedzai; B Bergman; M Bullinger; A Cull; N J Duez; A Filiberti; H Flechtner; S B Fleishman; J C de Haes Journal: J Natl Cancer Inst Date: 1993-03-03 Impact factor: 13.506
Authors: Angela Ju; Michelle A Josephson; Zeeshan Butt; Sheila Jowsey-Gregoire; Jane Tan; Quinetta Taylor; Kevin Fowler; Fabienne Dobbels; Fergus Caskey; Vivekanand Jha; Jayme Locke; Greg Knoll; Curie Ahn; Camilla S Hanson; Benedicte Sautenet; Karine Manera; Jonathan C Craig; Martin Howell; Claudia Rutherford; Allison Tong; Paul Harden; Carmel Hawley; Hallvard Holdaas; Ajay Israni; Michelle Jesse; Brenna Kane; John Kanellis; Bryce Kiberd; Joseph Kim; Chris Larsen; Alan Leichtman; Krista Lentine; Andrew Malone; Roslyn Mannon; Rainer Oberbauer; Rachel Patzer; John Devin Peipert; Hai An Phan; Emilio Poggio; Rihannon Reed; John Scandling; Ignatius Tang; Chris Watson; Daniel Contrares; Patricia Contreras; Daley Cross; Egle Juodvalkis; Den Koide; Jinny Koide; Adam Kozarewicz; Laura Kozarewicz; Richard Kozarewicz; Andrea Koritala; Elizabeth Lisiecki; Christine Lipuma; Margaret Lyman; Robert Mueller; Gloria Mueller; Larry Noble; Nancy Nolan; Stephen Nolan; Jim Thomas; Lynda Urbancyzk; James Zerante; Susan Zerante Journal: Transplantation Date: 2019-06 Impact factor: 4.939
Authors: Ana Elizabeth Figueiredo; Cate Goodlad; Michelle Clemenger; San San Haddoub; Jacqueline McGrory; Kim Pryde; Emma Tonkins; Nora Hisole; Edwina Anne Brown Journal: Int J Nephrol Date: 2012-09-25
Authors: Karan K Shah; Fliss E M Murtagh; Kevin McGeechan; Su Crail; Aine Burns; Anh D Tran; Rachael L Morton Journal: BMJ Open Date: 2019-05-19 Impact factor: 2.692
Authors: Aminu K Bello; Ikechi G Okpechi; Mohamed A Osman; Yeoungjee Cho; Brett Cullis; Htay Htay; Vivekanand Jha; Muhammad A Makusidi; Mignon McCulloch; Nikhil Shah; Marina Wainstein; David W Johnson Journal: Nat Rev Nephrol Date: 2022-09-16 Impact factor: 42.439