Coping with moderate to severe chronic graft-versus-host disease (cGVHD) among hematopoietic stem cell transplant (HCT) survivors: A qualitative analysis.

Abstract

257 Background: HCT survivors with moderate to severe cGVHD experience substantial symptoms, which negatively impact their quality of life. However, data are lacking on how patients cope with their illness. We aimed to achieve a deeper understanding of patients’ illness perception and how they cope with their cGVHD. Methods: We conducted qualitative interviews with 14 HCT survivors with moderate to severe cGVHD as defined by NIH Consensus Criteria. We used a semi-structured interview guide to elicit patients’ illness perception and coping strategies. Two raters coded interviews independently. We used content analysis to identify themes. Results: Patients highlighted two key themes in their efforts to cope with what they perceived as a “full time job” dealing with their cGVHD: personal transformation and empowerment. With respect to transformation, patients expressed the importance of (1) changing the goal of care from recovery to coping with a chronic condition, and (2) seeking new sources of support and connectedness specifically from other patients and caregivers affected by cGVHD. With respect to empowerment, patients sought more information and understanding about cGVHD in order to gain more control over their symptoms and illness experiences. Patients also noted the importance of knowledge and control in coping with their disease. By seeking knowledge and a greater understanding of their disease, patients explained that they felt that they were gaining control and feeling more empowered. Through the lens of change, it is clear that all patients sought an evolution in their care perspective by increasing care motivation, creating active support webs, and seeking further involvement in their own care. Conclusions: The diagnosis and course of cGVHD is psychologically transformative for patients. Although patients demonstrated an understanding of how they cope with the psychological and physical burden, they also expressed a wish for more education, support and a method of connecting with other HCT survivors. Future interventions should focus on enhancing patients’ coping strategies, knowledge of their illness and connections with other HCT survivors.