Agarwal Anushree, Valente Joseph, Buenrostro Karina, Macholl Katelyn, Mehta Juhi, Reddy Keerthana, Manayan Karina, Kim Parang, Sparks Aleah, Li Kunyi, Ahuja Pranav, Sun Kevin, Payton Kimberly, Norris Mark D, Bravo-Jaimes Katia, Reardon Leigh, Moons Philip, Okumura Megumi, Marcus Gregory M, Gurvitz Michelle
Division of Cardiology, Department of Medicine, University of California San Francisco, CA.
Team Uncle Joe, Katy, TX.
medRxiv. 2025 Apr 1:2025.03.31.25324723. doi: 10.1101/2025.03.31.25324723.
There is a critical need to support patients with congenital heart disease (CHD), especially during their young adulthood, to help maintain lifelong care with adult CHD specialists. The near ubiquitous use of digital tools, especially among the young adults, offers potential solutions to develop effective, scalable, accessible, and sustainable strategies to support these patients. This study describes the development of a digital tool using the combination of theory-based behavioral analysis, semi-structured interviews with 54 patients and clinicians, and community-based participatory research approaches. Four hopes for the digital tool emerged: easy access to credible resources, uplifting of patient voices, customizing to patient needs, and centering positivity and joy. The digital tool, named by community partners as Empower My Congenital Heart (EmpowerMyCH), is web- and mobile-based, Apple- and Android-compatible. Key intervention components include a digital medical passport, expert and peer advice, and peer support. EmpowerMyCH redefines how we support patients to be actively involved in their care and could potentially reduce some care gaps.
迫切需要为先天性心脏病（CHD）患者提供支持，尤其是在他们成年早期，以帮助他们获得成年先天性心脏病专家的终身护理。数字工具几乎无处不在，尤其是在年轻人中，这为制定有效、可扩展、可及且可持续的策略来支持这些患者提供了潜在的解决方案。本研究描述了一种数字工具的开发过程，该工具结合了基于理论的行为分析、对54名患者和临床医生的半结构化访谈以及基于社区的参与性研究方法。对该数字工具产生了四个期望：易于获取可靠资源、提升患者声音、根据患者需求定制以及以积极和快乐为中心。该数字工具被社区合作伙伴命名为“赋能我的先天性心脏病（EmpowerMyCH）”，基于网络和移动设备，兼容苹果和安卓系统。关键干预组件包括数字医疗护照、专家和同伴建议以及同伴支持。EmpowerMyCH重新定义了我们支持患者积极参与自身护理的方式，并有可能减少一些护理差距。
