e-QuoL Kicks Off with the Aim of Promoting Equality in Quality of Life for Childhood to Young Adulthood Cancer Patients, Survivors and their Families

The European Commission-funded e-QuoL project kicked off with the aim of using e-health tools to promote equality in quality of life for children, adolescents and young adults cancer survivors in Europe. The kick-off meeting organised by GCS Hôpitaux Universitaires Grand Ouest (HUGO), the coordinator of the project, was held from January 24th to January 26th in Angers, France, with the participation of all the partners including ISGlobal who is leading the Work Package (WP7) on communication.

Cancer affects 35,000 children, adolescents and young adults in Europe each year. Currently 80% of them survive at least 5 years but the intensive oncological treatments leave these survivors with late-health effects and reduced quality of life.

“The project will identify children, adolescents and young adults survivors (CAYACS) unmet needs and those of their families, and adapt accessible and affordable tools to address these needs”, says Charlotte Demoor-Goldschmidt, principal investigator of the project based at HUGO. “Ultimately, e-QuoL will improve their quality of life by enabling them to actively engage in their care and better self-manage their health and well-being”, she adds.

e-QuoL: 32 partners, 16 countries

The e-QuoL project brings together 32 partners from 16 European countries (France, Hungary, Norway, Italy, Denmark, Finland, Spain, Croatia, Germany, Bosnia and Herzegovina, UK, Slovenia, Romania, Belgium, The Netherlands and Switzerland). It’s a PanEuropean project supported by the PanCare and Harmonic consortia.

“There are several challenges providing follow-up care for CAYACS,” says Demoor-Goldschmidt. “It is resource-demanding in an overburdened healthcare system; psychosocial and supportive care needs are often unmet, and access is unequal between European countries,” she adds. As she pointed out during the first day of the meeting, the overall goal of the project is to “use e-health tools to promote equality in quality of life for CAYACS and their families”.

E-QuoL will adapt specifically for young survivors, an existing interoperable personalized e-health tool focusing on supportive care and quality of life that can be used alone or as an add-on module to existing tools such as digital survivorship care plans already used in several European countries for preventive medicine based on personalized screening recommendations. Through participatory research, involving CAYACS, families, associations, networks, health institutes, social sciences and humanities researchers and industrial partners with different backgrounds, it will identify the unmet needs of CAYACS and their families. The developed e-health tools will be accessible and affordable to address these needs on a person-centered approach providing medical follow-up, guidance on preventive behaviours (e.g. physical activity nutrition) and psychological and social support (e.g. education, employment).

During the three-day meeting and the general assembly, the researchers discussed how they plan to carry out the different tasks described in the project. The project has received a funding of 5.9 million euros from the Horizon Europe programme.

e-QuoL project:

• GCS HUGO, France
• Centre Hospitalier Universitaire d'Angers. France
• Institut de Cancérologie de l'Ouest, France
• Magyar Gyermekonkologiai Halozat -Magyar GYE, Hungary
• Universitetet I Oslo, Norway
• Centre Hospitalier Universitaire Saint Étienne - CHUSE, France
• Istituto Giannina Gaslini, Italy
• Resilience, France
• Oslo Universitetssykehus HF, Norway
• Aarhus Universitetshospital, Denmark
• Aarhus Universitet, Denmark
• Varsinais-Suomen Sairaanhoitopiirin Kuntayhtym, Finland
• HUS-YHTYMA, Finland
• ISGlobal, Spain
• Klinicki Bolnicki Centar Rijeka, Croatia
• Centre de Lutte Contre le Cancer Léon Bérard, France
• Cineca Consorzio Interuniversitario, Italy
• Universitaetsklinikum Essen, Germany
• Javna zdravstvena ustanova Univerzitetski klinicki centar, Bosnia and Herzegovina
• The Royal Marsden National Health Service Trust, UK
• Onkoloski Institut Ljubljana, Slovenia
• Epiconcept, France
• Asociatia Little People Romania, Romania
• Clinique Universitaire Saint-Luc ASBL, Belgium
• Assistance Publique des Hôpitaux de Paris, France
• Universitaestsmedizin der Johannes Guterberg-UN, Germany
• Pancare, The Netherlands
• Universitat Luzern, Switzerland
• Institut Gustave Roussy, France
• Érintettek Egyesület, Hungary
• Association Les Aguerris, France
• Fundatia Youth Cancer Europe, Romania

The project e-Quol, number 101136549, is funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or Horizon Europe, granting authority. Neither the European Union nor the granting authority can be held responsible for them.