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
Y1 - 2019/8
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
KW - quality of life (QOL)
KW - social sciences
UR - http://www.scopus.com/inward/record.url?scp=85062335259&partnerID=8YFLogxK
U2 - 10.1111/ajt.15267
DO - 10.1111/ajt.15267
M3 - Review article
AN - SCOPUS:85062335259
VL - 19
SP - 2306
EP - 2317
JO - American Journal of Transplantation
JF - American Journal of Transplantation
SN - 1600-6135
IS - 8
ER -