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

电子医疗工具可促进儿童到成年癌症患者、幸存者及其家人的生活质量平等 - 这是由 PanCare 和 Harmonic 联盟支持的 PanEuropean 项目

• 批准号: 10098114
• 金额: $ 9.74万
• 依托单位: THE ROYAL MARSDEN NHS FOUNDATION TRUST
• 依托单位国家: 英国
• 项目类别: EU-Funded
• 财政年份: 2024
• 资助国家: 英国
• 起止时间: 2024 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=10098114
• 关键词: health; tools; promote; Equality; Quality; health; tools; promote; Equality; Quality

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.

癌症每年在欧洲影响35,000名儿童，青少年和年轻人（CAYAC）。目前的5年生存率为80％，但是密集的肿瘤治疗使CAYAC幸存者（CAYAC）的癌症风险增加或治疗引起的晚期健康影响，超过发病率和死亡率，以及降低的生活质量（QOL）。生存的后续护理包括监测癌症，管理所有类型的后期效果以及保持整体健康状况。它的房屋还涉及考虑受癌症破坏的家庭的需求。为CAYAC及其家人提供后续护理面临的挑战：i）i）在负担沉重的医疗保健系统中，这是对资源的需求，ii）心理社会和支持性的护理需求通常是未满足的，iii）欧洲国家之间的访问是不平等的。 E-Quol的总体目标是使用电子健康工具来促进Cayacs及其家人生活质量的公平。它将适应现有的可互操作的个性化电子卫生工具，该工具可以单独使用，也可以用作现有工具的附加模块，例如在几个欧洲国家已经使用的数字生存护理计划。通过参与研究，涉及来自15个不同国家和背景的CAYAC，家庭，协会，网络，卫生机构，社会科学和人文研究人员以及工业伙伴，我们将i）确定CAYAC家庭和幸存者的未满足需求（包括脆弱的群体：年轻的年龄和认知障碍，以及II）以及能够适用于这些需求，可适应这些需求。这些工具将提供以医学后续行为，预防性行为（例如体育活动，营养），心理和社会支持（例如教育，就业）到相关健康信息（例如，关于生殖问题）的以人为中心的方法。最终，E-Quol将通过使他们积极参与护理并更好地自我管理健康和福祉来改善Cayacs的QoL。此行动是“生活质量”项目的癌症任务集群的一部分。