The European Survivorship Passport: The basis for individual after-care
There are no uniform rules for providing after-care for children and young adults who have survived cancer in Switzerland and Europe. For example, the question arises as to which institutions or doctors are responsible for the often lifelong follow-up that patients need, and the time intervals at which check-ups are necessary. Once cancer treatment has ended, the regular check-ups, which may be required for five to ten years, depending on the case, are often performed by the paediatric oncologists responsible for the treatment. However, a long-term approach to follow-up examinations is particularly important because certain late effects may only become apparent years or decades after the cancer has been successfully treated. The aim is to avoid late effects wherever possible or to treat them at an early stage. This is why well organized, lifelong after-care is so essential for former cancer patients.
Survivorship Passports will make customized long-term after-care easier to provide. Once their treatment has been completed, each patient will receive a personalized Passport containing important information about their specific cancer diagnosis and the treatment they have received. Recommendations for regular follow-up will be formulated on the basis of the existing guidelines.
The document will provide a source of information for affected people and the doctors they may consult at a later date. The affected people often do not know who to turn to if they experience problems or whether these problems could be connected with their former condition. The information provided in the Survivorship Passport will ensure that former patients are better informed and make it easier for the GPs or specialists they consult to plan and carry out individual follow-up more effectively. Ultimately it will be possible to recognize and treat any late effects at an early stage and improve former childhood cancer patients' quality of life.
The desire for a solution that provides uniform, regulated long-term follow-up was expressed by former childhood cancer patients and parent organizations within the PanCare network. PanCare is a European network of doctors, childhood cancer survivors and their families. Together they have set themselves the goal of reducing or avoiding the late effects of childhood or adolescent cancer and improving former patients' quality of life. The Survivorship Passport was finally developed as part of a European research project (European Network for Cancer Research in Children and Adolescents, ENCCA) in close partnership with the expert groups responsible for developing the guidelines (International Guideline Harmonization Group for Late Effects of Childhood Cancer and PanCareSurFup).
Childhood Cancer Switzerland is committed to introducing the Survivorship Passport in all paediatric hospitals in Switzerland as a way of ensuring that all children and young people receive this important document after they have had cancer.
A working group is currently dealing with the project. It is not yet clear when the Survivorship Passport will be available. According to the project managers at ENCAA, it should be completed by 2016. We hope that it will then be possible to introduce the Survivorship Passport throughout Switzerland in 2017 at the latest.