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

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.

癌症每年影响欧洲 35,000 名儿童、青少年和年轻人 (CAYAC)，目前的 5 年生存率为 80%，但强化肿瘤治疗使 CAYAC 幸存者 (CAYACS) 患癌症或治疗引起的后期健康影响的风险增加。 、发病率和死亡率过高以及生活质量 (QoL) 下降。幸存者的后续护理包括监测癌症、管理所有类型的晚期影响以及维持整体健康。还涉及考虑功能因癌症而受到干扰的家庭的需求 为 CAYACS 及其家人提供后续护理面临着一些挑战：i) 在负担过重的医疗保健系统中需要大量资源，ii) 心理社会和支持性护理需求。 iii) 欧洲国家之间的访问权是平等的。 e-QuoL 的总体目标是使用电子医疗工具来促进 CAYACS 及其家庭的生活质量公平。它将适应现有的可互操作的个性化。电子健康工具可以单独使用，也可以作为现有工具的附加模块，例如已经在多个欧洲国家使用的数字生存护理计划，通过参与式研究，涉及 CAYACS、家庭、协会、网络、卫生机构、社会科学。以及来自 15 个不同国家和背景的人文研究人员和工业合作伙伴，我们将 i) 确定 CAYAC 家庭和幸存者（包括弱势群体：年轻人和认知障碍）未满足的需求，以及 ii) 采用易于使用且负担得起的工具来满足这些需求。这些工具将提供以人为本的方法，从医疗随访、预防行为（例如身体活动、营养）、心理和社会支持（例如教育、就业）到相关健康信息（例如生殖问题）。将使 CAYACS 能够积极参与护理并更好地自我管理自己的健康和福祉，从而提高 CAYACS 的生活质量。该行动是癌症使命系列“生活质量”项目的一部分。