Heamatopoietic Stem Cell Transplantation (HSCT) is a lifesaving therapy that has become increasingly used to treat a range of conditions in adults and children including leukaemia, lymphoma and some solid cancers(1). The development of this therapy has meant that there is now increased survival from what were once terminal conditions(1, 2). However, this comes at a cost. Survivors experience a range of long-term and late effects of therapy and require lifelong monitoring(3).
Historically, HSCT Centres have assumed responsibility for implementing and providing guideline based Long Term Follow Up (LTFU) care, however this is unsustainable, inefficient and can result in low value care. Some centres within Australia now have HSCT LTFU Advanced Practice Nurses who are responsible for co-ordinating the care of long-term survivors. While this model has increased adherence with LTFU care, it also is not sustainable and continues to place hospitals as the centre of post-HSCT care despite survivors being located within the community setting. Most LTFU can and arguably should be safely and effectively delivered or managed by primary care clinicians including General Practitioners (GP) and General Practice Nurses (GPN). These clinicians are located closer to the patients’ place of residence, often have existing relationships with these people and their families and have specific expertise in screening and prevention, health promotion, health education and infection prevention through vaccination. Transitioning care of patients between hospital and primary/community care is becoming crucial.
In this two phase study, we will be interviewing HSCT survivors, carers, and GPs/GPNs regarding their perceptions, experiences and preferences for long-term care and exploring barriers and facilitators to primary care involvement in LTFU. In phase II we will use the results from phase I to conduct a Consensus Development Workshop with key stakeholders to co-design interventions to support survivors, carers and GPs/GPNs in HSCT survivorship care.