JMIR research protocols · 2026
Adaptation of the Transition Readiness Assessment Questionnaire for Pediatric-Onset Multiple Sclerosis: Protocol for a User-Centered Design Approach.
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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Gambrah-Lyles Claudia, Abrams Aaron W, Loud Sara, Schmidt Hollie, Blosberg Emily, Wright Melissa, Poisson Kelsey E, Fisher Kristen S, O'Neill Kimberly A, Virupakshaiah Akash, Rose John W
Аннотация
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: This paper aims to describe a stakeholder-engaged, implementation science-guided protocol for adapting the Transition Readiness Assessment Questionnaire (TRAQ) version 6.0 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 to and facilitators of transition to adult care and define essential self-management competencies in POMS. Survey content will be informed by constructs from the dynamic adaptation process framework and existing TRAQ 6.0 domains. Identified competencies will be refined using a Delphi consensus process. Through cognitive interviewing and a multidisciplinary focus group of collaborators, the adapted measure will be reviewed 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 6.0 to the POMS population. This study was funded in July 2025. The health care provider survey was disseminated in November 2025 across the 27 sites in the US Network of Pediatric Multiple Sclerosis Centers. The patient and caregiver surveys have been finalized, and distribution is projected to begin in June 2026, with a target of 15 patients and 15 caregivers. As of manuscript submission, no patients or caregivers have been recruited, and data analysis has not yet started. Data collection is expected to conclude by the end of 2026, and results are anticipated for publication in 2027.
CONCLUSIONS: This protocol outlines a rigorous, replicable approach to adapting a validated transition readiness measure to POMS. The adapted TRAQ 6.0 will support evidence-based transition planning and inform future psychometric testing and implementation research to improve the care of patients with POMS as they age.
OBJECTIVE: This paper aims to describe a stakeholder-engaged, implementation science-guided protocol for adapting the Transition Readiness Assessment Questionnaire (TRAQ) version 6.0 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 to and facilitators of transition to adult care and define essential self-management competencies in POMS. Survey content will be informed by constructs from the dynamic adaptation process framework and existing TRAQ 6.0 domains. Identified competencies will be refined using a Delphi consensus process. Through cognitive interviewing and a multidisciplinary focus group of collaborators, the adapted measure will be reviewed 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 6.0 to the POMS population. This study was funded in July 2025. The health care provider survey was disseminated in November 2025 across the 27 sites in the US Network of Pediatric Multiple Sclerosis Centers. The patient and caregiver surveys have been finalized, and distribution is projected to begin in June 2026, with a target of 15 patients and 15 caregivers. As of manuscript submission, no patients or caregivers have been recruited, and data analysis has not yet started. Data collection is expected to conclude by the end of 2026, and results are anticipated for publication in 2027.
CONCLUSIONS: This protocol outlines a rigorous, replicable approach to adapting a validated transition readiness measure to POMS. The adapted TRAQ 6.0 will support evidence-based transition planning and inform future psychometric testing and implementation research to improve the care of patients with POMS as they age.