The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: a qualitative exploration.

Purpose: Despite a haematopoietic stem cell transplant (HSCT) being a potentially curative treatment option for malignant and non-malignant disorders, patients may develop complex physical and psychological post-transplant complications. Consequently, transplant centres remain responsible for patients' life-long monitoring and screening practices. We sought to describe how HSCT survivors experience long-term follow-up (LTFU) monitoring clinics in England.

Method: A qualitative approach was adopted with data collected from written accounts. Seventeen transplant recipients were recruited from across England, and the data was analysed using thematic analysis.

Results: Data analysis elicited four themes: Transfer to LTFU care: 'will there be a change in my care, or will appointments just become less frequent?'; Care Coordination: 'it is good to know I am still in the system'; Relationship continuity: 'a good knowledge of me, my health and what is important to me'; and Late-effects Screening: 'there was not much information about what to expect or be aware of'.

Conclusions: HSCT survivors in England experience uncertainty and lack of information regarding the transfer from acute to long-term care and clinic screening practices. However, patients gain reassurance from remaining on a healthcare pathway and maintaining relationships with healthcare professionals.

Implications for cancer survivors: HSCT recipients entering LTFU monitoring clinics are a growing population of cancer survivors. Understanding and acknowledging this cohort of patients' needs may inform the development of tailored support to help patients navigate the complicated healthcare pathway.