A JU1,2, M JOSEPHSON3, M HOWELL1,2, J CRAIG1,2, A TONG1,2
1The University Of Sydney, Sydney, Australia, 2Centre for Kidney Research, Westmead, Australia , 3University of Chicago Medicine, Chicago, United States
Aim: To assess the content, validity, and reliability of patient-reported outcome measures for life participation in kidney transplantation recipients.
Background: Life participation is the ability to participate in key activities of daily living including work, study, family, travel, hobbies, and recreational and social activities. It is an important outcome for kidney transplant recipients but is measured infrequently, inconsistently, and using instruments that may not be valid for this population.
Methods: We searched MEDLINE, Embase, PsycINFO, CINAHL to April 2017 for all studies that measured and reported life participation in patients with kidney transplantation. Instruments measuring life participation were identified and reviewed for psychometric properties, content and general characteristics.
Results: In total, 252 studies were included in this review: 19 (8%) randomized controlled trials, 18 (7%) non-randomized trials and 215 (85%) observational studies. Across these studies, we identified 34 different measures that were used to assess life participation. The most frequently used instrument was the 36-Item Short Form Health Survey (SF-36) (162 [64%] studies) followed by KDQOL (25 [10%] studies) and EQ-5D (15 [6%] studies). Overall, there was little evidence supporting the use of these measures in the kidney transplantation population. There was some psychometric data available for only five of the measures including SF-36, KDQOL and EQ-5D. Psychometric properties examined in these measures were inconsistent and limited.
Conclusions: Although several scales have been used to measure life participation in kidney transplant recipients, there is insufficient evidence of validity to ensure an adequate representation of their experience. A well-validated but simple instrument for life participation is needed to improve the consistency and accuracy of measurement for a better understanding and management of this important patient-centred outcome.
PhD student working on patient-reported outcome measures for fatigue in haemodialysis and life participation in kidney transplantation