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

Abstract

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.