iCanCopeâ„¢: User-centered design approach to develop integrated smartphone and web-based pain self-management programme for adolescents

Abstract

Background Persistent pain in adolescents and young adults (AYA) can negatively impact all aspects of health related quality of life. AYA living with a persistent pain condition, such as chronic pain or arthritis, are expected to assume increasing responsibility for managing their pain. However, the vast majority of AYA with persistent pain never receive comprehensive education or coping skills training to promote pain self-management and improve their function. Aim: to address this problem by development of iCanCopeâ„¢ App, the first integrated smartphone and web-based pain self-management programme tailored for AYA aged 12-25 years with persistent pain. Method Phase 1, we explored pain self-management needs of AYA from the perspective of patients and healthcare providers. We also held a two-day consensus meeting where experts in pediatric pain and software development, as well as patients, developed standardised self-care pain treatment algorithms for the app. Phase 2, iCanCopeâ„¢ prototype created in collaboration with Centre for Global eHealth Innovation. This involved consultation with knowledge users and healthcare providers. Prototype was refined through iterative usability testing involving semi-structured, audio-recorded individual interviews with AYA. Results A pilot randomized controlled trial is now comparing iCanCope App to an app that monitors pain in youth with painful arthritis and chronic pain. Discussion The use of smartphone technology to deliver tailored pain self-management therapy may help to optimize and solidify positive health behaviours and prevent pain-related disability in youth with persistent pain. If found to be effective, the iCanCopeâ„¢ self-management platform will be adapted for other conditions and populations.