Exploring Genetic Testing Conversations in the Context of Hematopoietic Cell Transplant Survivors: A Thematic Analysis

Abstract

Background:Hematopoietic cell transplant (HCT) survivors face complex medical decisions throughout their long-term follow up (LTFU) care, including considerations around genetic testing. While research has examined genetic testing in various oncology settings, little is known about how HCT survivors engage with genetic testing conversations in LTFU care. Methods: We conducted a mixed-methods study with 23 HCT survivors receiving LTFU care.Semi-structured interviews exploring genetic testing experiences were conducted with 23 survivors who responded to genetics-specific questions (13 with original genetics questions and 10 with updated questions). Interviews were analyzed using thematic analysis. Results: Three key usage patterns emerged in how survivors engaged with genetic testing conversations: active integration (n=8), treatment-focused use (n=10), and non-integration (n=5). Family communication emerged as a central mechanism influencing engagement with genetic information. Key barriers included limited access to genetic services and varying levels of family involvement. Age-related differences appeared in how survivors approached genetic testing conversations, with younger survivors more focused on future implications and older survivors emphasizing immediate treatment decisions. Conclusions: Findings suggest opportunities to better support HCT survivors in genetic testing conversations through systematic approaches that consider age, family communication patterns, and timing of genetic services in LTFU care.