Navigating What Is Not Known—Patients’ Experience of the Life Threat Connected to Allogeneic Stem Cell Transplantation

Abstract

Background: Allogeneic stem cell transplantation (allo-SCT) represents a firmly established therapeutic option for patients facing (non-)malignant haematological diseases. Despite its curative potential, however, this treatment is associated with substantial morbidity and mortality rates as well as a decreased quality of life. Given this context, a scientific void needs to be addressed: How do patients deal with the existential situation of being exposed to a life threat despite the curative potential of their treatment? This study aims to explore the patients’ experiences considering their life threat in the context of the allo-SCT.

Methods: Qualitative semistructured, in-depth interviews were conducted with patients treated by allo-SCT over the course of transplantation (before, during or after hospitalization). Interview data were interpreted using category-based qualitative content analysis.

Results: Seventeen interviews were conducted. Results revealed a strong focus on hope and avoidance of dealing with the life threat. At the same time, challenges due to the lack of alternative treatments and the uncertain course were highlighted. The data revealed that patients wished to receive support by healthcare professionals, their carers and their social environment in general. Beyond that, patients desired to obtain honest information within an open discussion about a realistic prognosis and risk of treatment and course of disease.

Conclusion: The findings emphasize an interplay between hope, avoidance and psychological distress in the face of the patients’ life threat. To assist allo-SCT recipients in navigating their life threat during treatment, it is desirable to establish avenues that provide adequate support.

Trial Registration: German Registry of Clinical Trials: DRKS00027290