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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

Projektbeschreibung

Das Leben nach Krebs im Kindesalter verändern

In Europa werden jedes Jahr 35 000 Kinder, Jugendliche und junge Erwachsene mit der harten Realität einer Krebserkrankung konfrontiert, wobei die Überlebenden mit erhöhten Gesundheitsrisiken und einer eingeschränkten Lebensqualität zu kämpfen haben. Vor diesem Hintergrund wird das Team des EU-finanzierten Projekts e-QuoL eHealth-Instrumente einsetzen, um eine gleichberechtigte Lebensqualität für Überlebende und ihre Familien zu gewährleisten. Das e-QuoL-Team betreibt in fünfzehn Ländern partizipative Forschung, um ungedeckte Bedürfnisse zu ermitteln und zugängliche Instrumente anzupassen und damit einen personenzentrierten Ansatz zu fördern. Von der medizinischen Nachsorge bis hin zu psychologischer Unterstützung und präventivem Verhalten befähigt das e-QuoL-Team die Überlebenden, aktiv ihre Gesundheit zu managen, und fördert auf diese Weise bessere Zukunftsaussichten für Krebsüberlebende. Diese Initiative steht im Einklang mit dem Schwerpunkt Lebensqualität der Mission „Krebs“.

Ziel

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.

Schlüsselbegriffe

Programm/Programme

Koordinator

GCS HOPITAUX UNIVERSITAIRES GRAND OUEST
Netto-EU-Beitrag
€ 185 510,00
Adresse
4 RUE LARREY CHU D ANGERS
49100 Angers
Frankreich

Auf der Karte ansehen

Region
Pays de la Loire Pays de la Loire Maine-et-Loire
Aktivitätstyp
Other
Links
Gesamtkosten
€ 1 121 870,00

Beteiligte (25)

Partner (6)