Physical activity in young people with epilepsy: development of an informational software application

BACKGROUND: Research suggests that physical activity (PA) has potential benefits for young people with epilepsy (YPE); however, further studies are needed to explore how healthcare providers can promote effective interventions in collaboration with YPE and their families. OBJECTIVE: This knowledge translation project aimed to understand healthcare providers' perspectives on PA discussions and design a tool to support PA engagement among YPE. METHODS: Surveys of specialists, nurses, nurse practitioners, and trainees in pediatric neurology and epilepsy programs in the USA, Canada, Israel and Turkey were conducted to assess current PA discussions in clinical care. Inductive content analysis of responses was guided by eight themes from our previous research. Findings from the surveys and prior focus groups with YPE and their parents informed the development of a web app. RESULTS: Among 73 respondents, healthcare providers emphasized the need for an accessible, easy-to-use online tool that YPE can understand and take home to review. They identified 23 activities YPE discussed during clinical visits. Content analysis of survey results yielded a Krippendorff's Alpha of 0.846 (95% CI: 0.717-0.967) and informed the app content. Many providers reported that time constraints and limited resources hinder PA discussions in clinical settings. CONCLUSION: Healthcare providers suggest that an accessible, user-friendly, cost-free tool may help address PA concerns and promote active lifestyles for YPE and their families. This project describes the early stages of using a translational research model to bridge evidence and practice, turning research findings into actionable interventions for patients and families.