A Systematic Review of the Content Validity of Self-Management Outcome Measurement Instruments for Youth With...

Assessing self-management is important for supporting transition from pediatric to adult multiple sclerosis (MS) care. This study aimed to identify a self-management measure for MS transition by evaluating content validity of existing measures. Various databases were searched from inception to March 27th 2025 for studies reporting the development or measurement properties of self-management measures. Included measures were MS-specific for any age or disease nonspecific (generic) for youth. Content validity was assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) Risk of Bias checklist. Additional content validity assessment was conducted using an exploratory method of linking content in measures to findings from our prior qualitative study on self-management in youth with MS. Sixteen adult MS measures and 12 youth generic chronic disease measures were identified. No measure had sufficient content validity according to COSMIN assessments. Based on content linking, MS measures generally lacked assessment of topics like management of non-MS medications, school, insurance and finances, driving, sexual health, family planning, household, and substance use. Youth measures showed better coverage of these topics but lacked coverage of important MS-specific areas, like managing chronic symptoms, disease stigma, fatigue, and cognition. None of the self-management measures identified are suitable for use during MS transition. We suggest modifications to existing measures for this purpose.