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

在欧洲，癌症每年影响35000名儿童、青少年和年轻人(CAYAC)。目前的5年生存率为80%，但强化的肿瘤治疗使CAYAC幸存者(CAYAC Surviors，CAYAC)面临更高的癌症风险或治疗导致的晚期健康影响，过高的发病率和死亡率，以及降低的生活质量(QOL)。对幸存者的后续护理包括监测癌症、管理所有类型的后遗症，以及保持整体健康。它还应该包括考虑那些功能被癌症扰乱的家庭的需求。为CAYAC及其家人提供后续护理有几个挑战：i)在负担过重的医疗体系中需要资源，ii)心理社会和支持性护理需求往往得不到满足，iii)欧洲国家之间获得的机会不平等。E-QuoL的总体目标是使用电子健康工具促进CAYAC及其家庭在生活质量方面的公平。它将调整现有的可互操作的个性化电子健康工具，该工具可以单独使用，也可以作为现有工具的附加模块，例如已经在几个欧洲国家使用的数字生存护理计划。通过参与性研究，包括来自15个不同国家和背景的CAYAC、家庭、协会、网络、卫生机构、社会科学和人文科学研究人员以及行业合作伙伴，我们将：i)确定CAYAC家庭和幸存者(包括弱势群体：青少年和认知障碍)未得到满足的需求；ii)采用可获得和负担得起的工具来满足这些需求。这些工具将提供一种以人为中心的方法，从医疗跟踪、预防性行为(例如，身体活动、营养)、心理和社会支持(例如，教育、就业)到相关的健康信息(例如，关于生殖问题)。最终，e-QuoL将通过使CAYACS积极参与他们的护理并更好地自我管理他们的健康和福祉来改善CAYACS的生活质量。这项行动是癌症使命关于“生活质量”项目集群的一部分。

Cancer affects 35,000 children, adolescents and young adults(CAYAC) in Europe each year. Current 5-yearsurvival 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. Itshould 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.