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: 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.