PUBLIC HEALTH INSTITUTION UNIVERSITY CLINICAL CENTER OF THE REPUB
PUBLIC HEALTH INSTITUTION UNIVERSITY CLINICAL CENTER OF THE REPUB
1 Projects, page 1 of 1
Open Access Mandate for Publications and Research data assignment_turned_in Project2024 - 2027Partners:AU, VARSINAIS-SUOMEN HYVINVOINTIALUE, Oslo University Hospital, UMC-Mainz, PUBLIC HEALTH INSTITUTION UNIVERSITY CLINICAL CENTER OF THE REPUB +20 partnersAU,VARSINAIS-SUOMEN HYVINVOINTIALUE,Oslo University Hospital,UMC-Mainz,PUBLIC HEALTH INSTITUTION UNIVERSITY CLINICAL CENTER OF THE REPUB,Institute of Oncology Ljubljana,Cineca,HUS,ASOCIATIA LITTLE PEOPLE ROMANIA,AP-HP,GCS HOPITAUX UNIVERSITAIRES GRAND OUEST,Istituto Giannina Gaslini,EPICONCEPT,Children's Hospital Zagreb,Clinical Hospital Center Rijeka,UiO,CLB,RESILIENCE,Essen University Hospital,MAGYAR GYERMEKONKOLOGIAI HALOZAT -MAGYAR GYERMEKONKOLOGUSOK ES GYERMEKHEMATOLOGUSOK TARSASAGA,Cliniques Universitaires Saint-Luc,PANCARE,CHU SAINT-ETIENNE,AUH,ISGLOBALFunder: European Commission Project Code: 101136549Overall Budget: 7,131,750 EURFunder Contribution: 5,907,680 EURCancer 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.
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