Patient-reported outcome measures for life participation in kidney transplantation

A systematic review

Angela Ju, Bi Yang Chow, Angelique F. Ralph, Martin Howell, Michelle A. Josephson, Curie Ahn, Zeeshan Butt, Fabienne Dobbels, Kevin Fowler, Sheila Jowsey-Gregoire, Vivekanand Jha, Jayme E. Locke, Jane C. Tan, Quinetta Taylor, Claudia Rutherford, Jonathan C. Craig, Allison Tong

Research output: Contribution to journalArticleResearchpeer-review

Abstract

For many patients with end-stage kidney disease, transplantation improves survival and quality of life compared with dialysis. However, complications and side effects in kidney transplant recipients can limit their ability to participate in activities of daily living including work, study, and recreational activities. The aim of this study was to identify the characteristics, content, and psychometric properties of the outcome measures used to assess life participation in kidney transplant recipients. We searched MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018 for all studies that reported life participation in kidney transplant recipients. Two authors identified instruments measuring life participation and reviewed for characteristics. In total, 230 studies were included: 19 (8%) randomized trials, 17 (7%) nonrandomized trials, and 194 (85%) observational studies. Across these studies, we identified 29 different measures that were used to assess life participation. Twelve (41%) measures specifically assessed aspects of life participation (eg, disability assessment, daily activities of living), while 17 (59%) assessed other constructs (eg, quality of life) that included questions on life participation. Validation data to support the use of these measures in kidney transplant recipients were available for only 7 measures. A wide range of measures have been used to assess life participation in kidney transplant recipients, but validation data supporting the use of these measures in this population are sparse. A content relevant and validated measure to improve the consistency and accuracy of measuring life participation in research may inform strategies for transplant recipients to be better able to engage in their life activities.

Original languageEnglish
Pages (from-to)2306-2317
Number of pages12
JournalAmerican Journal of Transplantation
Volume19
Issue number8
DOIs
StatePublished - 1 Aug 2019

Fingerprint

Kidney Transplantation
Kidney
Activities of Daily Living
Quality of Life
Patient Reported Outcome Measures
Aptitude
Psychometrics
MEDLINE
Chronic Kidney Failure
Observational Studies
Transplant Recipients
Dialysis
Outcome Assessment (Health Care)
Survival
Research
Population

Keywords

  • clinical research/practice
  • health services and outcomes research
  • kidney disease
  • kidney transplantation/nephrology
  • quality of life (QOL)
  • social sciences

Cite this

Ju, Angela ; Chow, Bi Yang ; Ralph, Angelique F. ; Howell, Martin ; Josephson, Michelle A. ; Ahn, Curie ; Butt, Zeeshan ; Dobbels, Fabienne ; Fowler, Kevin ; Jowsey-Gregoire, Sheila ; Jha, Vivekanand ; Locke, Jayme E. ; Tan, Jane C. ; Taylor, Quinetta ; Rutherford, Claudia ; Craig, Jonathan C. ; Tong, Allison. / Patient-reported outcome measures for life participation in kidney transplantation : A systematic review. In: American Journal of Transplantation. 2019 ; Vol. 19, No. 8. pp. 2306-2317.
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title = "Patient-reported outcome measures for life participation in kidney transplantation: A systematic review",
abstract = "For many patients with end-stage kidney disease, transplantation improves survival and quality of life compared with dialysis. However, complications and side effects in kidney transplant recipients can limit their ability to participate in activities of daily living including work, study, and recreational activities. The aim of this study was to identify the characteristics, content, and psychometric properties of the outcome measures used to assess life participation in kidney transplant recipients. We searched MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018 for all studies that reported life participation in kidney transplant recipients. Two authors identified instruments measuring life participation and reviewed for characteristics. In total, 230 studies were included: 19 (8{\%}) randomized trials, 17 (7{\%}) nonrandomized trials, and 194 (85{\%}) observational studies. Across these studies, we identified 29 different measures that were used to assess life participation. Twelve (41{\%}) measures specifically assessed aspects of life participation (eg, disability assessment, daily activities of living), while 17 (59{\%}) assessed other constructs (eg, quality of life) that included questions on life participation. Validation data to support the use of these measures in kidney transplant recipients were available for only 7 measures. A wide range of measures have been used to assess life participation in kidney transplant recipients, but validation data supporting the use of these measures in this population are sparse. A content relevant and validated measure to improve the consistency and accuracy of measuring life participation in research may inform strategies for transplant recipients to be better able to engage in their life activities.",
keywords = "clinical research/practice, health services and outcomes research, kidney disease, kidney transplantation/nephrology, quality of life (QOL), social sciences",
author = "Angela Ju and Chow, {Bi Yang} and Ralph, {Angelique F.} and Martin Howell and Josephson, {Michelle A.} and Curie Ahn and Zeeshan Butt and Fabienne Dobbels and Kevin Fowler and Sheila Jowsey-Gregoire and Vivekanand Jha and Locke, {Jayme E.} and Tan, {Jane C.} and Quinetta Taylor and Claudia Rutherford and Craig, {Jonathan C.} and Allison Tong",
year = "2019",
month = "8",
day = "1",
doi = "10.1111/ajt.15267",
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Ju, A, Chow, BY, Ralph, AF, Howell, M, Josephson, MA, Ahn, C, Butt, Z, Dobbels, F, Fowler, K, Jowsey-Gregoire, S, Jha, V, Locke, JE, Tan, JC, Taylor, Q, Rutherford, C, Craig, JC & Tong, A 2019, 'Patient-reported outcome measures for life participation in kidney transplantation: A systematic review', American Journal of Transplantation, vol. 19, no. 8, pp. 2306-2317. https://doi.org/10.1111/ajt.15267

Patient-reported outcome measures for life participation in kidney transplantation : A systematic review. / Ju, Angela; Chow, Bi Yang; Ralph, Angelique F.; Howell, Martin; Josephson, Michelle A.; Ahn, Curie; Butt, Zeeshan; Dobbels, Fabienne; Fowler, Kevin; Jowsey-Gregoire, Sheila; Jha, Vivekanand; Locke, Jayme E.; Tan, Jane C.; Taylor, Quinetta; Rutherford, Claudia; Craig, Jonathan C.; Tong, Allison.

In: American Journal of Transplantation, Vol. 19, No. 8, 01.08.2019, p. 2306-2317.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Patient-reported outcome measures for life participation in kidney transplantation

T2 - A systematic review

AU - Ju, Angela

AU - Chow, Bi Yang

AU - Ralph, Angelique F.

AU - Howell, Martin

AU - Josephson, Michelle A.

AU - Ahn, Curie

AU - Butt, Zeeshan

AU - Dobbels, Fabienne

AU - Fowler, Kevin

AU - Jowsey-Gregoire, Sheila

AU - Jha, Vivekanand

AU - Locke, Jayme E.

AU - Tan, Jane C.

AU - Taylor, Quinetta

AU - Rutherford, Claudia

AU - Craig, Jonathan C.

AU - Tong, Allison

PY - 2019/8/1

Y1 - 2019/8/1

N2 - For many patients with end-stage kidney disease, transplantation improves survival and quality of life compared with dialysis. However, complications and side effects in kidney transplant recipients can limit their ability to participate in activities of daily living including work, study, and recreational activities. The aim of this study was to identify the characteristics, content, and psychometric properties of the outcome measures used to assess life participation in kidney transplant recipients. We searched MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018 for all studies that reported life participation in kidney transplant recipients. Two authors identified instruments measuring life participation and reviewed for characteristics. In total, 230 studies were included: 19 (8%) randomized trials, 17 (7%) nonrandomized trials, and 194 (85%) observational studies. Across these studies, we identified 29 different measures that were used to assess life participation. Twelve (41%) measures specifically assessed aspects of life participation (eg, disability assessment, daily activities of living), while 17 (59%) assessed other constructs (eg, quality of life) that included questions on life participation. Validation data to support the use of these measures in kidney transplant recipients were available for only 7 measures. A wide range of measures have been used to assess life participation in kidney transplant recipients, but validation data supporting the use of these measures in this population are sparse. A content relevant and validated measure to improve the consistency and accuracy of measuring life participation in research may inform strategies for transplant recipients to be better able to engage in their life activities.

AB - For many patients with end-stage kidney disease, transplantation improves survival and quality of life compared with dialysis. However, complications and side effects in kidney transplant recipients can limit their ability to participate in activities of daily living including work, study, and recreational activities. The aim of this study was to identify the characteristics, content, and psychometric properties of the outcome measures used to assess life participation in kidney transplant recipients. We searched MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018 for all studies that reported life participation in kidney transplant recipients. Two authors identified instruments measuring life participation and reviewed for characteristics. In total, 230 studies were included: 19 (8%) randomized trials, 17 (7%) nonrandomized trials, and 194 (85%) observational studies. Across these studies, we identified 29 different measures that were used to assess life participation. Twelve (41%) measures specifically assessed aspects of life participation (eg, disability assessment, daily activities of living), while 17 (59%) assessed other constructs (eg, quality of life) that included questions on life participation. Validation data to support the use of these measures in kidney transplant recipients were available for only 7 measures. A wide range of measures have been used to assess life participation in kidney transplant recipients, but validation data supporting the use of these measures in this population are sparse. A content relevant and validated measure to improve the consistency and accuracy of measuring life participation in research may inform strategies for transplant recipients to be better able to engage in their life activities.

KW - clinical research/practice

KW - health services and outcomes research

KW - kidney disease

KW - kidney transplantation/nephrology

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KW - social sciences

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