McCann Lisa, Hewitt Christopher, McMillan Kathryn A
Digital Health and Wellness Group, University of Strathclyde, Glasgow, United Kingdom.
Clinical Health Psychology, Astley Ainslie Hospital, Edinburgh, United Kingdom.
JMIR Cancer. 2023 Mar 30;9:e41441. doi: 10.2196/41441.
A diagnosis of cancer in adolescence or young adulthood can pose many different and unique challenges for individuals, as well as their families and friends. Drawing on the concept of prehabilitation, the provision of high-quality, accessible, timely, reliable, and appropriate information, care, and support for young adults with cancer and their families is critical to ensure that they feel equipped and empowered to make informed decisions relating to their treatment and care. Increasingly, digital health interventions offer opportunities to augment current health care information and support provision. Co-designing these digital health interventions can help to ensure that they are meaningful and relevant to the patient cohort, thereby maximizing their accessibility and acceptability.
This study had 4 primary interlinked objectives: understand the support needs of young adults with cancer at the time of diagnosis, understand the potential role of a digital health solution to assist in the delivery of prehabilitation for young adults with cancer, identify appropriate technologies and technological platforms for a digital prehabilitation system of care, and develop a prototype for a digital prehabilitation system of care.
This was a qualitative study using interviews and surveys. Young adults aged 16 to 26 years diagnosed with cancer within the last 3 years were invited to participate in individual user-requirement interviews or surveys. Health care professionals specializing in the treatment and care of young adults with cancer and digital health professionals working in the industry were also interviewed or completed a survey. Consensus feedback interviews were conducted with 3 young adults and 2 health care professionals after the development of the first generation of the prototype app.
In total, 7 individual interviews and 8 surveys were completed with young adults with a range of cancer diagnoses. Moreover, 6 individual interviews and 9 surveys were completed with health care professionals, and 3 digital health professionals participated in one-on-one interviews. A prototype app with the working name of Cancer Helpmate was developed based on these collective participant data. Overall, feedback from participants across the data collection activities suggests that the concept for the app was positive during these developmental stages. Further insightful ideas for the app's future development were also identified.
Young adults with cancer and health care professionals are responsive to the need for more digitally driven services to be developed. Further development of an app such as Cancer Helpmate, which incorporates key features and functionalities directly informed by users, could help to augment the support provided to young adults with cancer.
青少年或青年时期被诊断出患有癌症，这对患者本人及其家人和朋友来说会带来许多不同且独特的挑战。借鉴术前康复的概念，为患有癌症的青年及其家人提供高质量、可获取、及时、可靠且合适的信息、护理和支持，对于确保他们有能力且有信心做出有关治疗和护理的明智决策至关重要。数字健康干预越来越多地为增强当前医疗保健信息和支持服务提供了机会。共同设计这些数字健康干预措施有助于确保它们对患者群体有意义且相关，从而最大限度地提高其可及性和可接受性。
本研究有4个相互关联的主要目标：了解癌症青年患者在确诊时的支持需求；了解数字健康解决方案在协助为癌症青年患者提供术前康复方面的潜在作用；确定数字术前康复护理系统合适的技术和技术平台；开发数字术前康复护理系统的原型。
这是一项采用访谈和调查的定性研究。邀请在过去3年内被诊断出患有癌症的16至26岁青年参与个人用户需求访谈或调查。还对专门从事癌症青年患者治疗和护理的医疗保健专业人员以及该行业的数字健康专业人员进行了访谈或让他们完成了一项调查。在第一代原型应用程序开发完成后，与3名青年和2名医疗保健专业人员进行了共识反馈访谈。
总共对患有各种癌症诊断的青年完成了7次个人访谈和8次调查。此外，对医疗保健专业人员完成了6次个人访谈和9次调查，3名数字健康专业人员参与了一对一访谈。基于这些收集到的参与者数据，开发了一个暂命名为“癌症助手”的原型应用程序。总体而言，数据收集活动中参与者的反馈表明，在这些开发阶段，该应用程序的概念是积极的。还确定了有关该应用程序未来发展的更具洞察力的想法。
患有癌症的青年和医疗保健专业人员对开发更多数字化驱动服务的需求有积极响应。进一步开发像“癌症助手”这样的应用程序，将用户直接提供的关键特征和功能纳入其中，可能有助于增强为患有癌症的青年提供的支持。
