JMIR Publications

ABSTRACT

Background:

Young adults with osteogenesis imperfecta (OI) must self-manage after transitioning to adult healthcare; yet they often feel lost, unprepared, and misunderstood in the adult healthcare system. Many are not medically followed after pediatric care despite potential risks of ongoing fractures, hearing loss, cardiac and respiratory complications. Supporting them understand their condition, manage symptoms, and leverage social support is critical. Although online self-management or transitional care programs exist, none are tailored for youth with OI. “Teens Taking Charge” is a promising eHealth program used in other chronic conditions to facilitate the transition to adult healthcare.

Objective:

To co-design and co-develop “Teens Taking Charge: Managing OI Online (Teens OI)” with youth and young adults with OI, and their parents, and healthcare professionals.

Methods:

A user-centered design guided by Garrett’s Theory of User Experience and UX principles was conducted at a university-affiliated, not-for-profit, pediatric, orthopedic hospital located in Canada. An additional survey validation was conducted at the 14th International Conference on OI. Youth with OI, parents, young adults with OI, and healthcare professionals were recruited via purposive sampling for interviews, focus groups, and an international survey. Two iterative semi-structured interview cycles, followed by focus groups, informed youth needs, content, and prototype refinement in Figma. Personas were developed from data to reflect youth needs and characteristics. Descriptive statistics summarized demographics, and thematic analysis informed iterative design decisions.

Results:

An 8-member advisory council, including 3 nurses, 1 social worker, 2 adults with OI, 1 parent, and 1 youth, oversaw the co-design and co-development of Teens OI followed by 10 youth with OI, 6 parents, and 8 young adults with OI. Six main themes guided website development: (1) Purpose (community, positivity, awareness), (2) Functionalities (interactive features), (3) Resources (clinician contacts, self-management, emergencies), (4) Learning (multi-format content and peer testimonials), (5) Visual Design (inclusive and engaging), and (6) Content (condition-specific information, self-management, transition, empowerment). Three engaging personas, capturing heterogeneity in age, education, family context, and goals, were created to facilitate the co-design and development. Most youth (80%) reported regular internet access and comfort using online platforms, 70% were unaware of OI support resources, relying primarily on friends (80%), family (80%), healthcare professionals (40%), and hospitals (40%). The survey included 35 respondents from 16 countries. Among them, 52% used online resources such as the OI Foundation, 24% accessed scientific databases, and 7.4% used social media.

Conclusions:

A user-centered design approach was used to co-develop Teens OI alongside youth, parents, healthcare professionals, and young adults with OI. Grounded in eHealth interventions and UX principles, the platform promotes self-management and global connectivity. Future work will focus on usability testing, ongoing content development, and rigorous evaluation to ensure youth with OI are knowledgeable, supported, and prepared for transition to adult healthcare.