Behavioral and Epidemiology Research Group, American Cancer Society, Atlanta, Georgia.
Department of Medicine and Urology, Northwell Health, Manhasset, New York.
Psychooncology. 2019 Oct;28(10):2060-2067. doi: 10.1002/pon.5193. Epub 2019 Aug 14.
The American Cancer Society and the National Cancer Institute launched and evaluated a personalized online program leveraging behavioral science principles to help people self-manage physical and emotional symptoms, improve communication skills, and lead healthier lives during and after a cancer diagnosis.
Cancer survivors were recruited from an academic medical and a community clinical setting (N = 40) to complete in-person user testing of the Springboard Beyond Cancer website, which included action decks and content to promote self-management. Action decks were printable or savable collections of information and action steps related to a cancer topic or treatment side effect. Participants performed structured tasks to evaluate the program's content and usability. Comments and reactions were recorded, and qualitative thematic analyses were conducted.
Most participants successfully found information about fatigue (95%), pain (83%), sexual side effects (90%), and support groups (85%). Survivors, particularly those in treatment, found information on the site to be clear, concise, and meeting their needs. Use of action decks to create self-management plans was inconsistent. Survivors reported needing more instruction and support within the program on how to best utilize enhanced functionality in action decks to prioritize their most pressing concerns.
Early stakeholder engagement throughout the multiple phases of prototyping and deployment are needed to fully maximize end user engagement. Providing actionable self-management content and activating tools to cancer survivors via an eHealth program is a feasible and scalable approach to increasing access to self-management tools and addressing cancer survivor needs.
美国癌症协会和美国国家癌症研究所发起并评估了一个个性化的在线项目，利用行为科学原理帮助人们在癌症诊断期间和之后自我管理身体和情绪症状、提高沟通技巧和过上更健康的生活。
从学术医疗和社区临床环境中招募癌症幸存者（N=40），以完成 Springboard Beyond Cancer 网站的现场用户测试，其中包括促进自我管理的行动计划和内容。行动计划是与癌症相关主题或治疗副作用的信息和行动步骤的可打印或可保存的集合。参与者执行结构化任务以评估该计划的内容和可用性。记录评论和反应，并进行定性主题分析。
大多数参与者成功找到了有关疲劳（95%）、疼痛（83%）、性功能障碍（90%）和支持小组（85%）的信息。幸存者，特别是那些正在接受治疗的人，发现该网站的信息清晰、简洁，满足他们的需求。行动计划的使用来制定自我管理计划并不一致。幸存者报告说，他们需要更多的指导和支持，以便在计划中最好地利用行动计划的增强功能来优先考虑他们最紧迫的问题。
在原型设计和部署的多个阶段中需要早期的利益相关者参与，以充分提高最终用户的参与度。通过电子健康计划向癌症幸存者提供可操作的自我管理内容和激活工具是一种可行且可扩展的方法，可以增加对自我管理工具的获取，并满足癌症幸存者的需求。
