Occupational Participation and Quality of Life in Persons With Chronic Graft-Versus-Host Disease (cGVHD): An Exploratory Study

Chronic Graft Versus Host Disease (cGVHD) is a common complication following allogeneic hematopoietic stem cell transplantation (allo-HCT), affecting around 55%¹ of the 25,000 annual allo-HCT recipients². cGVHD is associated with functional impairment, activity limitations, adverse mental health outcomes¹, and poor health-related quality of life (QOL)². Occupational therapists may be critical facilitators of occupational engagement for transplant survivors living with cGHVD. However, in this population there exists no routinely administered indicator of participation to inform such rehabilitative efforts. Previous research has not elucidated the relationship between QOL and activity limitations among these individuals.

This study investigated the nature and magnitude of cGVHD-related activity restrictions and the association between QOL and self-reported occupational participation. Data were drawn from a cohort of adults with moderate to severe cGVHD (n=31) enrolled in phase II drug efficacy trial at the National Institutes of Health. Participants completed the Short-Form 36 v.2 (SF-36) to evaluate QOL and the Activity Card Sort 2^nd Edition (ACS) to assess current activity participation as well as retained participation [current participation divided by activity prior to cGVHD onset (pre-cGVHD)]. Spearman’s correlations were used to explore the association between the SF-36 Physical Component Summary (PCS) scores, SF-36 Mental Component Summary (MCS) scores, and current and retained participation for ACS global and subscale scores. Scores at study enrollment were used in all analyses.

Patients only retained 72.2% of their pre-GVHD global activity participation. Greater retention was associated with better scores on both the PCS (r=0.378, p=0.036) and MCS (r=0.414; p=0.021). Higher current participation was associated with better PCS scores (r=0.444, p=0.012). Participants continued to engage in many of their pre-cGVHD low-demand leisure (83.5%), instrumental (77.7%), and social activities (72.1%), though they retained less than half (41%) of their high demand leisure activity participation. Patients who engaged in more high demand leisure activities at the time of assessment (r=0.416, p=0.020) and those who retained more of their pre-cGVHD participation in such activities (r=0.546, p=0.002) reported higher PCS scores. Greater retention of social activities was associated with higher MCS scores (r=0.483, p=006).

cGHVD is associated with notable limitations in activity participation, especially in high demand leisure activities. Results suggest that losses in global participation are associated with poorer physical and mental QOL, though this relationship differs by activity subdomain. Previous research similarly reported a positive correlation between global activity retention and overall QOL among stem cell transplant survivors³. These results highlight the importance of assessing loss of activity in specific domains to better understand the consequences of cGVHD. Future work should explore how fatigue, pain, range of motion, and fiscal or time constraints contribute to potent losses in high demand leisure and social activities for patients with cGVHD.

Given occupational therapy’s orientation towards enhancing participation⁴, occupational therapists may play a critical role in rehabilitation for persons with cGVHD. To our knowledge, this is the first study to use the ACS to measure participation among individuals with cGVHD. The association between decrements in activity participation and poor QOL suggests that administering the ACS may enable occupational therapists to provide targeted, evidence-based, and individualized care to patients with cGVHD in clinical practice.

References

1. Fraser, C. J., Bhatia, S., Ness, K., Carter, A., Francisco, L., Arora, M., . . . Baker, K. S. (2006). Impact of chronic graft-versus-host disease on the health status of hematopoietic cell transplantation survivors: a report from the Bone Marrow Transplant Survivor Study. Blood, 108(8), 2867 - 2873. doi:10.1182/blood-2006-02-003954

2. Bevans, M. F., Mitchell, S. A., Barrett, J. A., Bishop, M. R., Childs, R., Fowler, D., . . . Yang, L. (2014). Symptom Distress Predicts Long-Term Health and Well-Being in Allogeneic Stem Cell Transplantation Survivors. Biol Blood Marrow Transplant, 20, 387- 395. doi:10.1016/j.bbmt.2013.12.001

3. Lyons, K. D., Li, Z., Tosteson, T. D., Meehan, K., & Ahles, T. A. (2010). Consistency and Construct Validity of the Activity Card Sort (Modified) in Measuring Activity Resumption After Stem Cell Transplantation. The American Journal of Occupational Therapy, 64(4), 562 - 569. doi:10.5014/ajot.2010.09033

4. Occupational Therapy Practice Framework: Domain and Process (3rd Edition). (2014). American Journal of Occupational Therapy, 68. doi:10.5014/ajot.2014.682006