The lived experience of long-term late-effects monitoring for haematopoietic stem cell recipients in England: A qualitative exploration.

Objectives: This study aimed to explore the lived experience of post-transplant long-term late-effects monitoring for haematopoietic stem cell recipients in England.
Methods: A qualitative approach was adopted and used data collected from written accounts and semi-structured interviews. A total of nine transplant recipients were recruited from across England: the data was analysed using thematic analysis.
Results: Data analysis elicited three themes: monitoring awareness and intervals; clinic logistics; and future health threats. Recipients experienced a variation in awareness of monitoring requirements, and recipients with broader knowledge experienced difficulties obtaining tests. The depletion of, and increased length between appointments elicited feelings of abandonment for some recipients. Clinical logistical arrangements were described as being delivered by either transplant centre, primary health care only, or a dual approach, highlighting communication barriers and feelings of frustration. However, the support and reassurance from the monitoring clinics was perceived to be instrumental in recipients coping with future health threats.
Conclusion: Findings illustrate the complexity and importance of exploring hematopoietic stem cell transplant recipients' experiences of monitoring for late-effects in delivering a patient-centred approach to post-transplant care.