Project description
Implementing effective follow-up care for young cancer survivors
Childhood cancer survivors are prone to health and psychosocial late effects impacting their and their families' quality of life (QoL) and creating societal and economic challenges. Such problems can be abated by detecting treatable disease at an early phase. Intervening on time helps preserve the survivors' health, improves their QoL and allows them to receive specialised care. The EU-funded PanCareFollowUp project is introducing a person-centred approach to survivor follow-up care based on international clinical guidelines for the surveillance of late effects. The project will also provide a personalised, guideline-based eHealth lifestyle intervention programme as well as materials to support sustainable maintenance and replication of the PanCareFollowUp interventions.
Objective
The 5-year survival for children with cancer increased from 30% in the 1970s to more than 80% at present. There are up to 300,000 childhood cancer survivors in Europe and this number is increasing. Years after treatment, childhood cancer survivors are at high risk for developing health and psychosocial late effects, resulting in excess morbidity and mortality compared the general population. The impact on the quality of life (QoL) of survivors and their families, as well as the societal and economic burdens, are significant. However, these impacts can be reduced by long-term survivorship care to detect treatable disease at an early phase and start timely interventions to preserve health, improve QoL, as well as coordinate specialised care and empower survivors.
Implementing follow-up care, especially for young adult and adult survivors of childhood cancer, has proven challenging across Europe. These survivors have left paediatric care and most of them have no opportunity to visit experts in survivorship care. To improve survivorship care for these survivors across Europe, PanCareFollowUp will conduct a prospective cohort study to assess effectiveness, value, cost effectiveness and feasibility of the PanCareFollowUp Care intervention, a person-centred approach to survivor follow-up care based on international clinical guidelines for surveillance of late effects. PanCareFollowUp also includes the development and assessment of a personalised, guideline-based eHealth lifestyle intervention.
Ensuring that the PanCareFollowUp interventions are used in the real world is paramount to achieving enduring improvements to survivorship care. Hence, the project includes the development of materials to support sustainable maintenance and replication of the PanCareFollowUp interventions. The PanCare network will become the guardian of the interventions after the project, ensuring that the intervention materials are openly available, sustainably maintained and widely shared.
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Funding Scheme
RIA - Research and Innovation actionCoordinator
3584CS Utrecht
Netherlands