Psychometric Rigor and Gaps in Transition Readiness Assessment Tools for Youth with Neurosurgical Conditions: A Systematic Mapping Review

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Abstract

Background: Health care transition (HCT) is a critical process where adolescents and young adults with chronic medical conditions shift from pediatric to adult-oriented health systems. Despite its importance, youth with neurological and neurosurgical conditions face heightened barriers due to cognitive, psychosocial, and functional complexities. Objective: To systematically identify, categorize, and evaluate transition readiness assessment tools for youth with chronic illnesses, with a focus on those relevant to neurological and neurosurgical populations. Methods: A systematic mapping review was conducted across PubMed, Embase, Scopus, and Web of Science using predefined search terms and eligibility criteria. Included studies reported on the development or validation of tools assessing transition readiness in individuals with chronic conditions. Tools were classified as generic or condition-specific, evaluated using Terwee et al.’s psychometric quality framework. Results: 24 tools were identified: 13 generic and 11 condition-specific. Generic tools like (Transition Readiness Assessment Questionnaire) TRAQ, (Adolescent Assessment of Preparation for Transition) ADAPT, and TRANSITION-Q demonstrated strong internal consistency and construct validity but rarely assessed responsiveness or ecological validity. Disease-specific tools—particularly for spina bifida and epilepsy—showed high content relevance but limited generalizability and psychometric depth. Hydrocephalus and pediatric brain tumor survivor tools were underdeveloped. Responsiveness and test–retest reliability were evaluated in only 33% of tools; ecological validity was addressed in just two. Conclusion: While multiple tools measure transition readiness, most lack comprehensive psychometric validation, especially longitudinal and real-world application. Urgent need exists for condition-specific tools for neurosurgical populations, emphasizing responsiveness, ecological validity, and implementation science in future development.

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