Survivorship Passport: a safe-conduct towards optimisation of long-term care With the number of childhood cancer survivors reaching new heights, it is increasingly essential to improve the quality of care they receive as adults. A new Survivorship Passport, which summarises their medical history and treatment and flags up associated long-term health risks, aims to help achieve this goal.
Report by: Riccardo Haupt
Between 300,000 and 500,000 people in Europe are survivors of childhood cancer, and it is estimated that another 8,000 join their ranks each year. As young people with cancer receive treatments during a very delicate period of growth and development, many of them may face significant long-term health risks. By the time they reach 40 they often have at least one chronic health problem and are at increased risk of early death mainly due to subsequent cancers or cardiac or pulmonary conditions.1 Other, non-lethal, chronic conditions can affect survivors’ quality-of-life, and it is important that all these issues are well addressed, especially during the critical moment of adolescence and transition to adulthood. Unfortunately, a large number of these survivors either do not have a treatment summary of their medical history, or are unable to find professionals in adult healthcare with adequate experience in diagnosing and treating possible late effects of childhood cancer treatments. Moreover, nowadays people are more likely to move abroad and may need documentation translated into another language. SIOPE together with PanCare2 – a network of healthcare professionals, childhood cancer survivors and their families – have put better access to optimal long-
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The Passport is patient-oriented and accessible in multiple languages on a secure website
term care among their main priorities for all survivors of childhood cancer. The implementation of the ‘Survivorship Passport’ has been possible through EU-funded projects (PanCareSurFup,3 ENCCA4 and ExPO-rNet5). Thanks to a close collaboration between healthcare professionals (coordinated by the Gaslini Institute, Italy), survivors (ICCCPO) and IT experts (CINECA), an online passport was created providing relevant information on the medical history of each cancer survivor, including treatment data integrated from national/hospital
and clinical trials databases. Recommendations for tailored organ-specific follow-up, based on up-to-date guidelines (developed via PanCareSurFup), to facilitate the prevention, early detection and treatment of potential late effects are also provided. The Passport is patient-oriented and accessible in multiple languages on a secure website. Some paper versions of the Passport have already been made available at national level. Austria is the first European country to include the ‘Survivorship Passport’ in its National Cancer Plan.6 The goal now is for everyone to have a standardised Passport available both online and as a printed document. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine