JMIR Publications

ABSTRACT

Background:

Pediatric-onset multiple sclerosis (POMS) is a chronic, progressive neurologic condition requiring lifelong management and coordinated transition from pediatric to adult care. Evidence-based guidelines identify transition readiness assessment as a core component of successful transition; however, most POMS clinics do not formally assess readiness, and existing tools do not address POMS-specific challenges, such as fluctuating disability, complex treatment regimens, and cognitive impairment. This gap underscores the need for a transition readiness measure tailored to POMS.

Objective:

To describe a stakeholder-engaged, implementation science–guided protocol for adapting the Transition Readiness Assessment Questionnaire (TRAQ) to reflect the unique developmental and clinical needs of youth with POMS.

Methods:

Using adaptation and participatory research as our guiding implementation strategies, surveys will be administered to patients, caregivers, and clinicians to identify barriers and facilitators to transition to adult care and define essential self-management competencies. Survey content will be informed by constructs from the Dynamic Adaptation Process framework and existing TRAQ domains. Identified competencies will be refined using a Delphi consensus process. A multidisciplinary focus group of 8–10 collaborators will review the adapted measure to assess clarity, relevance, and perceived clinical utility.

Results:

This project will generate a consensus-driven set of POMS-specific transition competencies and systematically adapt the TRAQ to the POMS population.

Conclusions:

This protocol outlines a rigorous, easily replicable approach to adapting a validated transition readiness measure to POMS. The adapted TRAQ will support evidence-based transition planning and inform future psychometric testing and implementation research to improve the care of POMS patients as they age.