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PanCareFollowUp: Novel, patient-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for survivors and caregivers

Periodic Reporting for period 4 - PanCareFollowUp (PanCareFollowUp: Novel, patient-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for survivors and caregivers)

Période du rapport: 2023-07-01 au 2023-12-31

Today, more than 80% of children with cancer live longer than five years after diagnosis. There are now up to an estimated 300,000 childhood cancer survivors in Europe, with about 12,000 more survivors each year. Years after treatment, childhood cancer survivors are at higher risk for developing health and psychosocial long-term effects from their cancer treatment compared to their peers who have not had cancer. These long-term effects impact on the quality of life of survivors and their families, as well as carrying societal and economic burdens.

There are ways to reduce the impact of long-term effects by providing optimal, person-centred care to survivors over their lifetime. Survivors and healthcare experts all agree that survivors need effective, life-long Survivorship Care in order to live their lives to the fullest. Many diseases can be detected at an early, more treatable phase and survivors can be empowered to adopt healthy lifestyles to reduce their risk for many diseases, seek treatment for chronic health conditions and take action to improve their quality of life in partnership with their healthcare providers (HCPs).

To improve care across Europe for survivors of childhood cancer who are now adults, PanCareFollowUp developed and tested two interventions (Care, Lifestyle) that deliver a person-centred approach to Survivorship Care based on international clinical guidelines (Care) and healthy lifestyle promotion (Lifestyle). To make sure that care is changed for survivors in the real-world, the project also developed replication materials for both interventions.

Overall, PanCareFollowUp has successfully developed and tested two interventions for Survivorship Care, both of which have shown positive results in practice. The project as added to the scientific understanding of what Survivorship Care is needed and how this care can best be delivered, as well as provide resources for replication of the interventions and for advocacy for better Survivorship Care across Europe.
The project developed the Care and Lifestyle interventions using the best available evidence. Person-centred care is a key component of both the Care and Lifestyle interventions, so survivors and HCPs have been consulted to be sure that the interventions follow the best evidence available but can be tailored for each individual survivor. Training in person-centred care for HCPs has also been developed and delivered.

For the Care intervention, the focus is on risk-based routine screening and recommendations to detect and treat long-term effects. The team looked at existing clinical guidelines for care and developed new guidelines and pragmatic recommendations for areas where they were missing, as well as reviewed best practice approaches for summarising treatment histories. Standard templates were developed so that HCPs can give survivors their own personalised Treatment Summary and Survivorship Care Plan. A Survivor Questionnaire has also been developed to learn more about survivor needs and requirements. Open access publications (Eur J Cancer) are now available for the Care pragmatic recommendations and intervention materials. A prospective cohort study in Belgium, the Czech Republic, Italy and Sweden recruited 800 participants, with 735 participants completing the final 6-month follow-up data collection. Study participants received care in a late effects clinic and answered research questionnaires to help the team assess the intervention. In Italy, the intervention was delivered using the Survivorship Passport, a digital tool developed in previous EU-funded projects. HCPs also answered questionnaires and data was collected about cost and other feasibility factors. Analyses to date have shown an improvement in many aspects of empowerment, the primary study outcome. Many other outcomes, such as patient satisfaction, health-related quality of life and health economics, are also being analysed.

The Lifestyle intervention focuses on reducing risk for long-term effects by improving lifestyle behaviours using an eHealth-based coaching approach with motivational interviewing techniques. The intervention builds on an existing approach to lifestyle coaching, that has been further developed during the project using the latest evidence from the scientific literature on eHealth and on lifestyle behaviours. A feasibility study of the intervention was conducted in the Netherlands. 61 survivors were recruited to the study from two clinics. Overall, the results showed a high level of adherence and acceptability of the intervention, as well as sustained change in lifestyle goals set by the survivors with their lifestyle coaches.

Peer-reviewed publications of the results are expected in 2024, and will be shared on the project's Zenodo community once available (zenodo.org/communities/pancarefollowup).
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.
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