Meaningful Change in Childhood Participation: A Systematic Review Protocol for Child- and Caregiver-Anchored Estimates in Neurodevelopmental Disability

Version 1.0 — systematic review protocol preprint. Not peer reviewed. Unregistered. Background: A change in participation score does not establish whether children or caregivers consider it important. Published estimates may represent different constructs, reporters and statistical quantities, limiting their use as individual decision thresholds. Objective: To identify and appraise child- or caregiver-anchored estimates of important change in childhood participation, distinguish their interpretations, and map evidence gaps. Methods: Eligible longitudinal studies will derive, evaluate or explicitly attempt an important-change estimate for participation attendance or involvement among children with prespecified neurodevelopmental conditions who are younger than 18 years at baseline. Later assessments crossing age 18 will be retained and flagged. Searches are planned in PubMed, Embase, CINAHL, PsycINFO, ERIC and ProQuest Dissertations and Theses Global, with supplementary searching. Two human reviewers will independently select reports, extract data and appraise estimates. The unit is an estimate or documented failed attempt linked to its study family. Individual responder thresholds, anchor-defined mean changes and longitudinal group contrasts will retain distinct interpretations. Operational rules assess respondent alignment, anchor relevance, association with target change, precision and the importance represented by the anchor contrast. A bounded supporting measurement-property component uses applicable COSMIN methods. The co-primary outputs are an estimate catalogue and an evidence-gap and credibility map. Narrative synthesis will preserve instrument scales and study dependence; meta-analysis is not planned. Status and limits: Exploratory scoping and reference checks have begun. Formal eligible-study searches, screening, extraction, appraisal and synthesis have not begun. PROSPERO submission is planned before formal screening, subject to eligibility and completion of required declarations; no registration number is assigned. Search access and specialist review, author-specific declarations and adjudication arrangements remain to be completed. Full-text comparison with two recent predecessor reviews remains incomplete. No claim of being the first review is made. Files: The reader edition is the primary manuscript. The complete package includes an editable manuscript, a line-numbered journal review copy, Supplementary Methods, original diagram masters, draft searches, reporting and registry worksheets, and header-only execution forms. All worked examples are explicitly synthetic; no review findings or patient-level dataset are included. Funding and interests: No cash grant. Bharath Healthcare Laboratories Private Limited provides staff time and administration. The lead author has company equity and relevant intellectual-property interests, disclosed in the manuscript. The review is intended to inform future AbilityScore anchor design; it does not validate that instrument or establish treatment effectiveness. WHO and UN references provide context and do not imply endorsement.