Quality of life:- The “e-QuoL” project will develop a variety of digital tools to assist young cancer survivors manage their health and their follow-up care. The project is a collaborative effort involving 30 institutions from 16 European countries.

Thanks to improved treatments, an increasing number of children and adolescents are surviving cancer. However, intensive oncological treatments can have adverse long-term health consequences (late effects), lowering quality of life. Many childhood, adolescent and young adult cancer survivors (CAYACS) are unaware of the possibility of their risk for late effects.

Once cancer has been treated, cancer patients start to receive medical follow-up care. The aim is to monitor the success of the treatment and detect a possible relapse, or any illness- or treatment-related complications, at an early stage. The latter includes regular medical check-ups, as well as psycho-social support for coping with the effects of their condition and further therapy as needed.

The e-QuoL (Equality in Quality of Life) research project is supported by the Horizon Europe programme and aims to improve follow-up care for young people with cancer. It is a collaborative project involving 30 institutions from 16 European countries, including the University of Lucerne.

Improving cancer follow-up

The scope and integration of follow-up care programmes in European healthcare systems vary widely. In some European countries, digital tools have already been developed to provide CAYACS and healthcare professionals with easy access to relevant information and individualised follow-up care planning. As part of e-QuoL, improvements and additions to existing services are planned at different levels.

“The aim is to develop an e-health tool in the form of a mobile app that can be used throughout Europe and that offers a wide range of specific support to those affected," explains Gisela Michel, Professor of Health and Social Behaviour and project leader of e-QuoL at the University of Lucerne. The personalised information provided by the app is intended to help people better integrate their follow-up care into their lives to improve their health and enhance their quality of life. Additionally, a website is being developed, which, according to Professor Michel, "will enable family members of CAYACS to actively inform themselves and provide additional support.” The website will also help relatives to answer their own questions.

Collaborative development

As a first step, the team at the University of Lucerne will identify the information and support needs of CAYACS and their families in Europe. In addition, the content and structure of the e-health tool will be developed in workshops with stakeholders. The results will be used to adapt, extend and improve an existing e-health tool for adults, which will form the technical basis for the development of the new e-health tool. The University of Lucerne will develop the website for family members together with other project partners. AlphaGalileo/SP