CCRI: Survivorship Passport: For a better life after childhood cancer

EU funds research project to improve long-term follow-up care for childhood cancer survivors with 4 million euros.

In Europe, 35,000 children and adolescents are diagnosed with cancer every year, about 300 of them in Austria. Thanks to better cancer treatments, in recent decades the survival rate has increased from 20 to 80 percent in European countries rich in resources. However, 60 to 70 percent of all survivors worldwide struggle with late effects of the disease and its treatment. A particular challenge for long-term follow-up is the transition from pediatric to general adult medical care. Relevant information to identify individual support needs and to respond accordingly is often lacking.

All information in one passport

The so-called Survivorship Passport aims to close this supply gap across Europe and to improve long-term follow-up care. To ensure the best possible implementation of the European digital survivorship passport, the EU is funding the "PanCareSurPass" research project with four million euros as part of the Horizon 2020 research and innovation program. The passport provides survivors with a detailed and complete overview of their diagnosis, treatment and disease course. In addition, it includes evidence-based, personalized recommendations for long-term follow-up care. This enables to monitor survivors' health closely and more intensively than before – always based on their individual disease history. This could also make it easier for survivors to enter professional life and maintain a job.

Prof. Ruth Ladenstein, MD, MBA, cPM, head of the Implementation Strategy Development in the PanCareSurPass project and head of the Department of Studies and Statistics S²IRP at St. Anna Children's Cancer Research Institute in Vienna, comments: "The implementation of the Survivorship Passport at EU level is in many ways a success and a step towards overcoming the treatment inequalities of survivors in society. Based on this tool, adequate screening can be performed, and if necessary, appropriate therapies can be identified by means of targeted diagnostic strategies."

Investigation and broad implementation

So far, the Survivorship Passport is not yet available throughout the EU. However, thanks to Prof. Ladenstein's intensive efforts and the support of Austria’s “Onkologiebeirat”, the concept of the Survivorship Passport has already been anchored as an important strategic goal in the Austrian Cancer Plan. In 2021, Prof. Ladenstein's participation in the European Cancer Mission Board made it possible to anchor the concept for all age groups in Europe’s Beating Cancer Plan as well. Together with Survivors Austria, considerations have also been made regarding networking with the ELGA electronic medical record at the federal level.

The new SurPass version will be launched and tested in a multi-national study in Austria, Belgium, Germany, Italy, Lithuania and Spain at selected hospitals/cancer registries. The vision for the future is to anchor the Survivorship Passport in the electronic health records in Europe (ELGA in Austria). The scientific teams involved are analyzing the Survivorship Passport as well as relevant electronic interfaces together with patient organizations and healthcare professionals. The question of how to use available health data from different sources accurately and effectively is one aspect of the project. Furthermore, health economic aspects of the implementation are being analyzed.

In Austria, the association Survivors Austria – Children's Cancer Survivors Initiative will support the implementation of the PanCareSurPass project in terms of content and health policy. "As part of our cooperative framework with St. Anna Children's Cancer Research Institute and CCI Europe, the European umbrella organization for childhood cancer aid organizations, we will actively shape the project with our experience gained from 18 years of work with survivors," says Hannah Gsell, chairwoman of the Survivors Austria association and project manager at Childhood Cancer International (CCI) Europe.

Survivors: "Now we need the support of politics."

Asked for her point of view as a patient representative, Carina Schneider, a psychologist and board member of the Survivors Austria association and committee member of CCI Europe, says: "Early information about the possible late effects of cancer in childhood, adolescence and young adulthood is essential for one's own health management and for preventive health care. If you do not know what you may face or are likely to face, you cannot know what to pay particular attention to in terms of prevention and early detection. In Europe, it makes little difference whether you live in a rich or a poor country: there are de facto hardly any adequate care structures for the long-term follow-up of adult survivors of pediatric oncological diseases. We are impatient! For so many years, we have been working together with childhood cancer aid organizations and experts throughout Austria and Europe to develop the Survivorship Passport. Now we need the support of our politicians and our health care system to implement it, so that survivors get the long-term care they need."

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