JMIR Publications

ABSTRACT

Background:

Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision-making.

Objective:

This study adapted a mobile health (mHealth) application originally developed in Sweden to the needs of people with CF, their caregivers, and healthcare providers in the United States, and tested it as a platform for sharing patient-generated health data (PGHD) with the CF healthcare team.

Methods:

Focus groups with CF healthcare providers, adolescents with CF, and caregivers of children and adolescents with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of PGHD to a secure REDCap database was tested. Protocols for data management and clinical follow-up were also developed.

Results:

Five focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the healthcare team; language and presentation; sharing and privacy; as well as settings and accounts. Overall, healthcare providers recommended changes to align the mHealth platform with U.S. standards of care, people with CF and their caregivers requested to track more disease symptoms and clinical outcomes, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta-testers of the modified platform reported issues related to translatability to U.S. environment and various bugs.

Conclusions:

This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered in order to meet both end-user needs and evidence-based practice recommendations. Clinical Trial: NCT03910881