Activity Participation and Health-Related Quality of Life (QoL) in Patients With Chronic Graft-Versus-Host Disease (cGVHD)

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 highest current activity score, while the HDL had the lowest. The PCS score increased and the MCS score decreased from enrollment to 3 and 6 months. The PCS showed a clinically significant increase from enrollment to 3 and 6 months. At 6 months, the ACS global scores correlated with the PCS subdomain (r = 0.41, p = 0.05). Change in ACS global score correlated with PCS change from enrollment to 6 months (r = 0.59, p = 0.02).

CONCLUSION: The correlation between the ACS global score and the PCS at 3 months suggests that changes in activity participation are related to changes in physical HRQoL in patients with cGVHD. Although changes in ACS scores were not significant, the concurrent improvement in activity participation and physical HRQoL conveys the importance of activity engagement and the potential value of occupational therapy consultation for patients with cGVHD. However, further analysis with a larger patient cohort is warranted. This study illustrates the importance of meaningful activity participation for achieving occupational performance. The association between functional gains and HRQoL suggests that administering the ACS may enable occupational therapists to provide targeted, evidence-based, and individualized care to patients with cGVHD.

References

Carpenter, P. A., Kitko, C. L., Elad, S., Flowers, M. E., Gea-Banacloche, J. C., Halter, J. P., . . . Couriel, D. R. (2015). National Institutes of Health Consensus Development Project on Criteria for Clinical Trials in Chronic Graft-versus-Host Disease: V. The 2014 Ancillary Therapy and Supportive Care Working Group Report. Biol Blood Marrow Transplant, 21(7), 1167-1187. doi:10.1016/j.bbmt.2015.03.024

Lee, S. J., Wolff, D., Kitko, C., Koreth, J., Inamoto, Y., Jagasia, M., . . . Pavletic, S. (2015). Measuring therapeutic response in chronic graft-versus-host disease. National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: IV. The 2014 Response Criteria Working Group report. Biol Blood Marrow Transplant, 21(6), 984-999. doi:10.1016/j.bbmt.2015.02.025

Lyons, K. D., Hull, J. G., Root, L. D., Kimtis, E., Schaal, A. D., Stearns, D. M., . . . Ahles, T. A. (2011). A pilot study of activity engagement in the first six months after stem cell transplantation. Oncol Nurs Forum, 38(1), 75-83. doi:10.1188/11.ONF.75-83

Ramachandran, V., Kolli, S. S., & Strowd, L. C. (2019). Review of Graft-Versus-Host Disease. Dermatologic Clinics. doi:https://doi.org/10.1016/j.det.2019.05.014