User Preferences for the Design of a Mobile Health System to Support Transition-Age Youth With Epilepsy

Transition-age youth with epilepsy (TAYWE) experience poor self management and adverse health outcomes. The purpose of this study was to gain the perspectives of TAYWE, their caregivers, and clinicians to inform the design of a mobile health (mHealth) system to support the self-management needs of TAYWE.

Individual semi-structured interviews and focus groups were conducted with TAYWE, their caregivers, and clinicians who manage their care.

Sixteen TAYWE and seven caregivers participated in focus group sessions, and four clinicians were interviewed. Participants expressed the need for an mHealth system that addressed privacy, supervision of caregiver involvement, a user-friendly system design, and motivation to sustain ongoing use. Three themes evolved: current mobile app use, mHealth systems features and functions, and implementation concerns.

Data from this study informs the design of an mHealth system to support self-management in TAYWE and identifies important areas for practitioners to address when providing health care to TAYWE.