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

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 a prespecified neurodevelopmental condition 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, supplemented by citation, registry and preprint searching. Two human reviewers will independently select reports, extract data and appraise estimates. The analysis unit is an estimate or documented failed attempt within a study family. Participation content, anchor, reporter and estimand will be coded separately. Individual responder thresholds, anchor-defined mean change and longitudinal group contrasts will retain distinct interpretations. An adapted domain-level appraisal will assess respondent alignment, anchor relevance, association with target change, precision and the importance represented by the anchor contrast. 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.

Discussion: The review will distinguish supported interpretations from uncertainty and missing evidence, including if few estimates are eligible. It may guide future anchor studies; it will not establish proprietary-instrument validity or treatment effectiveness.

Registration: PROSPERO submission is planned before formal screening, subject to eligibility and completion of the required declarations. No identifier has been assigned.