Patients’ symptoms and challenges during the first year after allogeneic haematopoietic cell transplantation—patients’ own expressions

Abstract Purpose The study aimed to describe patients’ experiences of physical, psychological, social, and existential symptoms and challenges during the first year after allogeneic haematopoietic cell transplantation (allo-HCT). Methods Quantitative and qualitative data were collected and analysed with descriptive methods as part of a large retrospective cross-sectional online survey of patients who underwent allo-HCT between 2017 and 2020. Results In total, 126 (59.7%) of all eligible patients participated, mean age 57 years (range 21–75), equal distribution of gender and time after allo-HCT. Most patients (58%) had experienced fewer than 5 coexisting symptoms, although 8% reported more than 10. Physical symptoms or challenges (83.0%) were most often reported, followed by social (52%), existential (50%), and psychological (43%), as described in responses to open-ended questions. Analysed descriptions resulted in 12 categories/areas of physical symptoms and challenges; two categories each of psychological— My inner self and Me in my context ; social— Social isolation and Impact on relationships ; and existential symptoms and challenges —Re-evaluating life and myself and An uncertain future . Conclusion Patients experienced a variety of symptoms and challenges as a multidimensional experience during the first year after allo-HCT. A holistic approach to symptoms and challenges is needed to address individual patients’ situations. This knowledge emphasises the importance of patients receiving supportive care to navigate life after transplantation and into survivorship.