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

Reporting period: 2019-01-01 to 2020-06-30

Today, more than 80% of children with cancer live longer than five years after their diagnosis, a significant improvement over the 30% survival in the 1970s. There are now up to an estimated 300,000 childhood cancer survivors in Europe and this number is increasing by about 12,000 survivors per 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.

However, 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.

To improve follow-up care across Europe for survivors of childhood cancer who are now adults, PanCareFollowUp is developing and assessing two interventions (Care and Lifestyle). These interventions will deliver a person-centred approach to survivorship care based on international clinical guidelines for surveillance of long-term effects from cancer treatment (Care) and healthy lifestyle promotion (Lifestyle). To make sure that care is changed for survivors in the real-world, the project will also focus on how to continue and extend use of the Care and Lifestyle interventions after the project ends.
Work in the first 18 months of the project has focused on developing the Care and Lifestyle interventions using the best available evidence from existing research. For the Care intervention, the focus is on risk-based routine screening and recommendations to detect and treat long-term effects. The team has 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. Using all the evidence gathered, standard templates have been developed so that healthcare providers 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 to further support person-centred care.

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.

Person-centred care is a key component of both the Care and Lifestyle interventions, so survivors and healthcare providers have been consulted to be sure that the interventions follow the best evidence available but can be tailored meet the needs and requirements of each individual survivor. Training in person-centred care has also been developed for healthcare providers who will deliver the interventions.

In parallel with the development of the Care and Lifestyle interventions, clinics in Belgium, the Czech Republic, Italy, the Netherlands and Sweden have been hard at work preparing for studies to assess the interventions in real clinical practice. For the Care intervention, a prospective cohort study with 800 survivors will be invited to attend clinics in Belgium, the Czech Republic, Italy and Sweden, where they will receive care and answer research questionnaires to help the team assess how well the intervention works in practice. In Italy, the intervention will be delivered using the Survivorship Passport, a digital tool developed in previous EU-funded projects. Healthcare providers will also answer questionnaires and data will be collected about cost and other feasibility factors. The team have now decided what things it is important to measure in the study and assembled the questionnaires, as well as created a central database to securely collect all the data. The main outcome of the Care study will be empowerment of survivors, but the team will look at many other outcomes, such as patient satisfaction, health-related quality of life and health economics. For the Lifestyle intervention, a feasibility study will be conducted in the Netherlands. 60 survivors will be recruited to the study from two clinics. Both studies will start soon, with the Care recruiting patients over the course of two years and the Lifestyle study recruiting over one year.
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 guidance for 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 outcomes. Empowerment will be a key measure in both the Care and Lifestyle studies, enabling the consortium to determine if interventions have the desired effects. Overall, the project outputs will 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, healthcare providers need evidence-based guidance on what care to deliver to which survivors, as well as when to deliver it. 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. This significant work now enables healthcare providers 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 peer-reviewed publications are being prepared to widely share the evidence base across Europe and internationally. Using these guidelines and recommendations combined with results of the Care and Lifestyle studies, the team will develop 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 survivorship care.