Activity Participation and Health-Related Quality of Life

PURPOSE: Chronic graft versus host disease (cGVHD) is a complication that affects 40-60% of patients after allogeneic hematopoietic stem cell transplantation (Ramachandran, Kolli, & Strowd, 2019). Common cGVHD symptoms, such as joint contractures and weakness, are associated with poor health-related quality of life (HRQoL) outcomes and functional losses, including decreased ability to perform activities of daily living (ADL) (Carpenter et al., 2015; Lyons et al., 2011). Occupational therapists are important facilitators of improving activity engagement and HRQoL. However, few studies have examined the relationship between HRQoL and occupational engagement in patients with cGVHD. This study investigated the use of the Activity Card Sort (ACS), a measure of activity participation, and the Medical Outcome Short Form 36 v.2 (SF-36), an established HRQoL measure, to evaluate the relationship between activity participation and HRQoL in patients with cGVHD. DESIGN: This study is a secondary analysis of data from an IRB-approved, randomized, phase-two dose-escalating drug efficacy trial. Adult patients ages 18 to 75 (3 months n=31, 6 months n=23) with a history of cGVHD were enrolled at the NIH Clinical Center (clinicaltrials.gov identifier: NCT01688466) between February 2013 and December 2016. Patients completed the ACS and SF-36 self-reports at enrollment, 3, and 6 months. METHOD: Change over time was measured using a paired T-test or a Wilcoxon signed rank test. Pearson's correlations between the ACS global retained score and SF-36 mental component score (MCS) and physical component score (PCS) were calculated at each time point. Minimal clinically important differences (MCIDs) followed guidelines defined by the NIH Consensus Development Project (Lee et al., 2015). RESULTS: The median retained activity scores increased from enrollment to 3 and 6 month timeframe for all ACS subdomains. At all time points, the low-demand leisure (LDL) subdomain had the highest activity retention and high-demand leisure (HDL) had the lowest. The ACS instrumental retained score showed significant change between enrollment and 3 months (p = 0.046). The median of the current activity scores increased from enrollment to 3 months for the ACS global, instrumental, and social subdomains while the LDL and HDL scores decreased. From enrollment to 6 months, all current activity ACS subdomain median scores increased except the HDL score. At all time points, the instrumental subdomain had the