为被诊断为癌症的年轻人开发一个电子康复系统:以用户为中心的设计研究。

IF 3.3 Q2 ONCOLOGY JMIR Cancer Pub Date : 2023-03-30 DOI:10.2196/41441
Lisa McCann, Christopher Hewitt, Kathryn A McMillan
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引用次数: 1

摘要

背景:青春期或青年期的癌症诊断会给个人以及他们的家人和朋友带来许多不同和独特的挑战。根据康复的概念,为年轻的癌症患者及其家人提供高质量、可获得、及时、可靠和适当的信息、护理和支持,对于确保他们有能力和能力就其治疗和护理做出知情的决定至关重要。数字卫生干预措施越来越多地为增加当前的卫生保健信息和支持提供提供了机会。共同设计这些数字卫生干预措施有助于确保它们对患者群体具有意义和相关性,从而最大限度地提高其可及性和可接受性。目的:本研究有4个相互关联的主要目标:了解年轻癌症患者在诊断时的支持需求,了解数字健康解决方案在帮助年轻癌症患者提供康复治疗方面的潜在作用,确定数字康复治疗系统的适当技术和技术平台,并开发数字康复治疗系统的原型。方法:采用访谈和调查相结合的定性研究方法。在过去3年内被诊断患有癌症的16至26岁的年轻人被邀请参加个人用户需求访谈或调查。专门从事年轻癌症患者治疗和护理的卫生保健专业人员以及在该行业工作的数字卫生专业人员也接受了采访或完成了一项调查。在第一代原型应用程序开发后,对3名年轻人和2名医疗保健专业人员进行了共识反馈访谈。结果:总共完成了7次个人访谈和8次调查,其中包括一系列癌症诊断的年轻人。对医疗卫生专业人员进行了6次单独访谈和9次问卷调查,并对3名数字医疗专业人员进行了一对一访谈。基于这些参与者的集体数据,开发了一个名为Cancer Helpmate的原型应用程序。总体而言,参与者在数据收集活动中的反馈表明,在这些开发阶段,应用程序的概念是积极的。对于应用的未来发展,我们也提出了一些更有见地的想法。结论:患有癌症的年轻成年人和医疗保健专业人员对开发更多数字驱动服务的需求做出了回应。进一步开发诸如Cancer Helpmate这样的应用程序,它包含了用户直接告知的关键特性和功能,可以帮助增加对患有癌症的年轻人的支持。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Developing an e-Prehabilitation System of Care for Young Adults Diagnosed With Cancer: User-Centered Design Study.

Background: 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.

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

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来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
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