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e-health tools to promote Equality in Quality of Life for childhood to young adulthood cancer patients, survivors and their families - a PanEuropean project supported by PanCare and Harmonic consortia

Description du projet

Transformer des vies après un cancer pédiatrique

En Europe, 35 000 enfants, adolescents et jeunes adultes sont confrontés chaque année à la dure réalité du cancer, alors que les survivants doivent faire face à des risques accrus pour leur santé et à une qualité de vie réduite. Dans cette optique, le projet e-QuoL, financé par l’UE, utilisera des outils de santé en ligne pour garantir l’équité en matière de qualité de vie pour les survivants et leurs familles. Présent dans 15 pays, e-QuoL mène des recherches participatives pour identifier les besoins non satisfaits et adapter des outils accessibles, en promouvant une approche centrée sur la personne. Du suivi médical au soutien psychologique et aux comportements préventifs, e-QuoL permet aux survivants du cancer (CAYACS) de gérer activement leur santé et d’améliorer leur avenir. Cette initiative s’inscrit dans le cadre de l’accent mis sur la qualité de vie par le groupe Mission Cancer.

Objectif

Cancer affects 35,000 children, adolescents and young adults (CAYAC) in Europe each year. Current 5-year survival rates are 80%, but the intensive oncological treatments leave CAYAC Survivors (CAYACS) at increased risk of cancer or treatment-induced late health effects, excess morbidity and mortality, and reduced quality of life (QoL). Follow-up care of survivors includes monitoring of cancers, managing all types of late effects, and maintaining overall health. It should also involve considering the needs of families whose functioning has been disrupted by cancer. There are several challenges providing follow-up care for CAYACS and their families: i) it is resource-demanding in an overburdened healthcare system, ii) psychosocial and supportive care needs are often unmet, and iii) access is inequal between European countries.
The overall goal of e-QuoL is to use e-health tools to promote Equity in Quality of Life for CAYACS and their families. It will adapt an existing interoperable personalised e-Health tool 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. Through participatory research, involving CAYACS, families, associations, networks, health institutes, social sciences and humanities researchers and industrial partners from 15 different countries and backgrounds, we will i) identify the unmet needs of CAYAC families and survivors’ (including vulnerable groups: young age and cognitive impairments) and ii) adapt accessible and affordable tools to address these needs. These tools will provide a person-centred approach from medical follow-up, preventive behaviours (e.g. physical activity, nutrition), psychological and social support (e.g. education, employment) to related health information (e.g. on reproductive issues). Ultimately, e-QuoL will improve CAYACS’ QoL by enabling them to actively engage in their care and better self-manage their health and well-being. This action is part of the Cancer Mission cluster of projects on “Quality of Life.

Mots‑clés

Programme(s)

Coordinateur

GCS HOPITAUX UNIVERSITAIRES GRAND OUEST
Contribution nette de l'UE
€ 185 510,00
Adresse
4 RUE LARREY CHU D ANGERS
49100 Angers
France

Voir sur la carte

Région
Pays de la Loire Pays de la Loire Maine-et-Loire
Type d’activité
Other
Liens
Coût total
€ 1 121 870,00

Participants (25)

Partenaires (6)