This paper describes the methods that were used to develop a health behaviour intervention specifically for teenage and young adult cancer survivors (TYACS). The program of work, carried out in partnership with CLIC Sargent (a UK based cancer charity for children and young people) was guided by The Behaviour Change Intervention Design Process. A systematic review of existing intervention studies was carried out and TYACS were surveyed on their interest in receiving health behaviour information and their preference regarding the format, delivery and timing of such information. Health professionals were also surveyed to gather their views on how health behaviour information would be best delivered to young people with cancer. The results of these studies informed the development of a collection of health behaviour change intervention resources containing comprehensive lifestyle information and behaviour change support tools. TYACS and TYA health professionals were invited to review and provide feedback on the relevance, appeal and usability of the resources. It is hoped that by involving TYACS and TYA representatives at every stage of intervention development the problem of low uptake and adherence commonly encountered during intervention piloting will be prevented. Background Teenage and Young Adult Cancer Survivors (TYACS) are advised to adopt a healthy lifestyle in order to reduce the impact of cancer and its treatments upon their long-term health. However, at present there are no interventions available in the UK to support TYACS to lead a healthy lifestyle. To inform the development of a lifestyle intervention for TYACS a partnership was set up between academic behavioural scientists and CLIC Sargent, a cancer charity which supports children and young people. Methods A series of studies to understand patient and professionals needs and perspectives regarding health behaviour change were carried out. TYACS were surveyed to gather data on their current health behaviour status; interest in, and experience of receiving, lifestyle advice; and preference regarding the type, format, and delivery of a lifestyle intervention. Health care professionals were surveyed simultaneously to gather their views on how best to promote health behaviour change to TYACS. In this paper we summarise key findings from the development work, the resulting lifestyle intervention, and new data from a preliminary evaluation study exploring TYACS and TYA health professionals’ views on the relevance, appeal and usability of the intervention resources. Results A collection of health behaviour change intervention resources containing lifestyle information and behaviour change support tools were developed. These intervention resources were well received by TYACS and health professionals with the majority rating the information as high quality, helpful and relevant. Over 80% of TYACS reported they would find the support tools ‘very appealing’ or ‘quite appealing’. TYACS and health professionals provided feedback on how the resources could be improved including commenting that more personalized or tailored health behaviour information would be beneficial. Discussion and conclusion It is hoped that by involving TYACS and TYA representatives at every stage of intervention development,and carrying out a preliminary evaluation of the intervention resources, the problem of low uptake and adherence commonly encountered during formal intervention piloting and evaluation will be prevented.

中文翻译：

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青少年癌症幸存者健康行为改变资源的开发和用户评估


本文描述了专门针对青少年和年轻成人癌症幸存者 (TYACS) 制定健康行为干预措施的方法。该工作计划是与 CLIC Sargent（一家英国儿童和青少年癌症慈善机构）合作开展的，以行为改变干预设计流程为指导。对现有干预研究进行了系统回顾，并对 TYACS 进行了调查，了解他们对接收健康行为信息的兴趣以及对此类信息的格式、传递和时间安排的偏好。还对卫生专业人员进行了调查，以收集他们对如何最好地向患有癌症的年轻人提供健康行为信息的看法。这些研究的结果为开发一系列健康行为改变干预资源提供了信息，其中包含全面的生活方式信息和行为改变支持工具。 TYACS 和 TYA 卫生专业人员受邀对资源的相关性、吸引力和可用性进行审查并提供反馈。希望通过让 TYACS 和 TYA 代表参与干预制定的每个阶段，可以防止干预试点期间常见的低接受度和依从性问题。背景 建议青少年和年轻成人癌症幸存者 (TYACS) 采用健康的生活方式，以减少癌症及其治疗对其长期健康的影响。然而，目前英国尚无可用的干预措施来支持 TYACS 过上健康的生活方式。为了为 TYACS 生活方式干预的发展提供信息，学术行为科学家与 CLIC Sargent（一家支持儿童和青少年的癌症慈善机构）建立了合作伙伴关系。 方法进行了一系列研究，以了解患者和专业人员对健康行为改变的需求和观点。对 TYACS 进行了调查，以收集有关他们当前健康行为状况的数据；对生活方式建议的兴趣和接受生活方式建议的经验；以及对生活方式干预的类型、形式和实施方式的偏好。同时对医疗保健专业人员进行了调查，以收集他们对如何最好地促进 TYACS 健康行为改变的看法。在本文中，我们总结了开发工作的主要发现、由此产生的生活方式干预以及初步评估研究的新数据，该研究探讨了 TYACS 和 TYA 卫生专业人员对干预资源的相关性、吸引力和可用性的看法。结果开发了包含生活方式信息和行为改变支持工具的健康行为改变干预资源集合。这些干预资源受到 TYACS 和卫生专业人员的好评，大多数人认为这些信息质量高、有帮助且相关。超过 80% 的 TYACS 表示他们会发现支持工具“非常有吸引力”或“相当有吸引力”。 TYACS 和卫生专业人员提供了有关如何改进资源的反馈，包括评论说更个性化或量身定制的健康行为信息将是有益的。讨论与结论希望通过让TYACS和TYA代表参与干预制定的每个阶段，并对干预资源进行初步评估，可以防止在正式干预试点和评估过程中常见的低吸收和依从性问题。