TY - JOUR
T1 - Patient-reported outcome measures for life participation in peritoneal dialysis
T2 - a systematic review
AU - Manera, Karine E.
AU - Ju, Angela
AU - Baumgart, Amanda
AU - Hannan, Elyssa
AU - Qiao, Wenjing
AU - Howell, Martin
AU - Nataatmadja, Melissa
AU - Wilkie, Martin
AU - Loud, Fiona
AU - Schwartz, Daniel
AU - Hurst, Helen
AU - Jassal, Sarbjit Vanita
AU - Figueiredo, Ana
AU - Mehrotra, Rajnish
AU - Shen, Jenny
AU - Morton, Rachael L.
AU - Moraes, Thyago
AU - Walker, Rachael
AU - Cheung, Catherine
AU - Farragher, Janine F.
AU - Craig, Jonathan
AU - Johnson, David W.
AU - Tong, Allison
PY - 2021/5
Y1 - 2021/5
N2 - 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.
AB - 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.
KW - life participation
KW - outcome measures
KW - peritoneal dialysis
UR - http://www.scopus.com/inward/record.url?scp=85105765640&partnerID=8YFLogxK
U2 - 10.1093/ndt/gfaa244
DO - 10.1093/ndt/gfaa244
M3 - Article
C2 - 33367781
AN - SCOPUS:85105765640
VL - 36
SP - 890
EP - 901
JO - Nephrology Dialysis Transplantation
JF - Nephrology Dialysis Transplantation
SN - 0931-0509
IS - 5
ER -