Abstract
Purpose
Chronic graft-versus-host-disease (cGVHD), an inflammatory condition affecting allogeneic hematopoietic cell transplantation (HCT) survivors, is associated with a range of debilitating physical and psychological sequela. Yet HCT recipients with cGVHD are virtually absent from survivorship intervention research. We conducted a randomized clinical trial to evaluate the feasibility and preliminary efficacy of a multidisciplinary group coping skills intervention (Horizons) tailored to meet these patients’ unique needs. For this follow-up qualitative analysis, we evaluated the perceived impact of the Horizons intervention by the group participants.
Methods
We purposefully selected a subset of Horizons participants (
n
= 19) to complete audio-recorded exit interviews via semi-structured interview guide. We used rapid analysis to characterize participant feedback in three domains: (1) motivations to participate, (2) perceived benefits of participation, and (3) impacts of participation.
Results
Findings highlight participants’ motivations to participate centered on desires to connect with others living with cGVHD and to help future patients. Perceived benefits of participation focused on the following categories: (1) connecting with other survivors, (2) learning about cGVHD, and (3) learning coping strategies to manage specific cGVHD symptoms. Impacts of participation on everyday life variably reflected categories of (1) increased sense of empowerment to contact their care team with questions and concerns, (2) increased support and validation in their struggles with cGVHD, and (3) renewed motivation or progress toward personal and health-specific goals.
Conclusion
Study findings demonstrate participants’ appreciation for a group-based opportunity to connect with others living with cGVHD and strengthen skills for navigating cGVHD challenges. Results support the ongoing need for evidence-based interventions to improve quality of life among HCT survivors.
Trial registration
www.ClinicalTrials.gov
, identifier NCT04479995. Date of Registration: July 21, 2020.