Profoundly Depleted: Qualitative Study of Persistent Fatigue Following Hematopoietic Cell Transplant

Context: Fatigue is the most commonly-reported symptom during long-term survivorship after hematopoietic cell transplant (HCT). Objectives: We sought to describe how HCT recipients experience and manage persistent post-transplant fatigue and to identify patient perceptions of and preferences for fatigue support. Methods: HCT recipients who were at least six months after autologous or allogeneic HCT and experiencing moderate to severe fatigue based on the fatiue symptom inventory (severity rating ≥4 / 0–10 scale) participated in this qualitative study conducted at a tertiary care transplant center. Participants completed in-depth individual interviews using semi-structured guides that probed their experiences with persistent fatigue. We simultaneously interviewed a small sample of five HCT clinicians. We used thematic analysis to code verbatim transcripts for a priori and identified themes. Results: Participants (N = 20; median (range) age = 55 (31–78) years; n = 9 female) were a median of 3.88 years (6 months–13 years) post-transplant and reported moderate fatigue severity (median = 5 (4–9)/0–10 scale). Final themes included: 1) challenges describing the multidimensional symptom of persistent fatigue, 2) fatigue as an impairing ongoing symptom, 3) identification of a variety of factors modulating persistent fatigue, 4) use of action- and emotion-oriented strategies to manage fatigue, and 5) desire for additional information and fatigue support. Conclusion: Study findings highlight the numerous and ongoing disruptions to everyday life experienced by patients living with persistent fatigue following HCT, variety of management strategies, and their desire for supportive programs to aid in the management of this symptom. Results support the need for future research into evidence-based interventions to alleviate HCT survivors’ fatigue.