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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

Project description

Transforming lives after childhood cancer

In Europe, 35 000 children, adolescents, and young adults face the harsh reality of cancer each year, with survivors grappling with increased health risks and reduced quality of life. With this in mind, the EU-funded e-QuoL project will use e-health tools to ensure Equity in Quality of Life for survivors and their families. Spanning 15 countries, e-QuoL engages in participatory research to identify unmet needs and adapt accessible tools, promoting a person-centred approach. From medical follow-up to psychological support and preventive behaviours, e-QuoL empowers survivors to actively manage their health, fostering a brighter future for Cancer Survivors (CAYACS). This initiative aligns with the Cancer Mission cluster's focus on Quality of Life.

Objective

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.

Programme(s)

Coordinator

GCS HOPITAUX UNIVERSITAIRES GRAND OUEST
Net EU contribution
€ 185 510,00
Address
4 RUE LARREY CHU D ANGERS
49100 Angers
France

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Region
Pays de la Loire Pays de la Loire Maine-et-Loire
Activity type
Other
Links
Total cost
€ 1 121 870,00

Participants (25)

Partners (6)