At least two thirds of childhood cancer survivors are estimated to suffer from health and psychosocial late effects due to their previous cancer treatment. For 25% of survivors, the late effects are a life-threatening or fatal health problem. Without adequate surveillance and survivorship care, many survivors experience health issues that impact their well-being that could have been prevented or better managed with earlier detection and care. The PanCareFollowUp interventions are person-centred, designed to empower survivors to become partners in their own care, leading to improved well-being and health. Overall, the project outputs provide a robust framework for the delivery of high quality person-centred Survivorship Care. Importantly, the development of these resources has involved not only researchers but the final end users (survivors, HCPs) to ensure their needs and requirements are met.
In order to improve care, HCPs need evidence-based guidance on what care to deliver to which survivors, and when. While a number of clinical guidelines were available at the start of the project, there were a number of topics where guidelines were lacking. The team has contributed to evidence-based surveillance guidelines for these topics in collaboration with the International Guidelines Harmonisation Group and other international networks of experts, as well as formulated pragmatic recommendations that have now been published. Publications are also now available for barriers and facilitators to healthy behaviours. This significant work now enables HCPs to deliver survivorship care using the best available evidence, improving the health and well-being of survivors. The guidelines and pragmatic recommendations, have been incorporated into the Care intervention, and further peer-reviewed publications on the results of the Care and Lifestyle studies are being prepared to widely share the evidence base across Europe and internationally.
The project also developed materials to support replication of the interventions in new settings, which will be made available on the PanCare website in 2024 (www.pancare.eu). Researchers, clinicians and survivors collaboratively developed PLAIN language brochures to provide accessible information to survivors and carers, which are already publicly available (pancare.eu/plain-language-summaries). The team also developed evidence-based policy recommendations for Survivorship Care, which will be widely promoted by key survivorship organisations in Europe who are project partners (PanCare, SIOP Europe, CCI Europe) to lobby for better care.
