PURPOSE

The purpose of this study was to explore how haematopoietic cell transplantation (HCT) recipients define quality of life (QoL) and the impact of receiving a stem cell transplant.

METHODS

Qualitative one-on-one semi-structured interviews were conducted with patients aged ≥ 18 years who had received HCT. Interviews were audio recorded, transcribed verbatim and thematically analysed using NVivo 14 software. A patient advisory group (n = 6 patients) co-designed the qualitative interview study and were involved in developing the initial coding framework and themes generated.

RESULTS

Data saturation was reached after 21 interviews (median age 45 years, range 26-71 years). Participants described a change in perspective about the meaning of QoL post-transplant and having to adapt to a 'new normal'. Specifically, patients described how being immunocompromised post HCT negatively affected social, emotional and occupational QoL. Participants described facing a new, unfamiliar reality post-transplant and a feeling of being un-prepared for the long-term impact of HCT.

CONCLUSION

Patients require support to cope with continuously changing physical, social, emotional and occupational challenges. Supportive care interventions should be designed to address the impact of being immunocompromised.