Background
Effective communication between patients and healthcare providers is a crucial component in aftercare after allogeneic hematopoietic stem cell transplantation (alloHSCT). Despite significant advances, unmet physical and psychological needs due to communication failures persist.
Objective
We performed a multicenter cross-sectional study assessing domains not communicated and underlying causes to identify and comprehend communication gaps in alloHSCT aftercare.
Study design
Semi-structured in-depth interviews were conducted with patients after alloHSCT at the transplant centres Regensburg and Tel Aviv. Framework analysis was used to examine the qualitative data.
Results
The study recruited 47 patients with a median age of 57 years. A number of communication barriers were identified including (i): being overwhelmed during consultation preventing receiving and conveying information which interfered with early self-detection of chronic graft-versus-host disease; (ii) discrepancy in labelling psychosocial symptom load (e.g., psychological distress in part caused by war (Israel), cognitive impairment, adherence) being frequently neither recognized nor addressed due to discordance on who is considered responsible for bringing-up symptoms and issues considered as taboos, such as sexual health (iii) non-functioning chains of communication leading to loss of information. Other themes included strategies to compensate for communication deficits, i.e. (iv): buffering information gaps through social network and nurses. Finally, guidance and suggestions for communication and aftercare from the patient’s view were provided.
Conclusion
Our qualitative study highlights significant communication gaps experienced by patients undergoing alloHSCT. The findings advocate for better communication training for healthcare professionals, improvement of the informed consent process and the development of prompt sheets for patients and checklists for physicians.