Patient and provider perspectives on how a mobile health application may address barriers to Lynch Syndrome care
摘要
Lynch Syndrome (LS) is a common condition that increases risk of multi-organ cancers. Risk-reduction care is complex and challenging, resulting in suboptimal adherence care despite patient motivation. There is a need for an accessible, centralized, evidence-based platform that provides up-to-date medical information to patients and clinicians to navigate their complex care. The aim of this study was to understand how a mobile health application (mHealth app) could meet these needs.
MethodsSemi-structured interviews were conducted with a purposefully recruited stratified sample of adult patients with LS and clinicians across different specialties. Qualitative content analysis was used to explore experiences with LS care and perspectives on potential mHealth solutions, with triangulation of participant data to inform key components of mHealth app design.
FindingsThree core themes were identified, capturing the challenges LS patients face in managing their care and how an mHealth app can potentially overcome these challenges: (1) the importance of accurate and up-to-date information about LS, (2) the need for streamlined and centralized care management, and (3) the value of building connections to overcome isolation. Our study also identified key features of an mHealth app to address these challenges while optimizing usability and accessibility per patient/provider preference.
InterpretationLS patients and clinicians experience multifaceted barriers to LS management that an mHealth app can help overcome. This application can support LS patients and providers by empowering patients with vetted, up-to-date information, serving as a centralized location to store and organize their medical care, and providing opportunities to build connections.