A systematic review of measures for the core outcomes of chest health in children and young people with cerebral palsy: a protocol

Background A core outcome set (COS) for chest health in children and young people with cerebral palsy (CP) has been developed for use in research and routine clinical care. Three core outcomes were agreed: the views of the child, young person and/or parent/carer, chest infection(s), and swallow safety. The next methodological stage is to identify how to measure the COS, by developing a core outcome measurement set (COMS). This can improve consistency, comparability and quality of outcome reporting of these outcomes. Selection of these measures requires evaluation of their measurement properties for children and young people with CP within a community setting. Aim To systematically identify outcome measurement instruments, critically appraise their measurement properties and, where possible, recommend a feasible and acceptable COMS to assess the core outcomes for chest health in children and young people with CP. Method This protocol describes a four-step systematic review of outcome measurement instruments: (1) conceptual consideration for the three core outcomes of chest health in children and young people with CP; (2) systematic searches to identify candidate instruments; (3) quality assessment of measurement properties for candidate instruments with contextual appropriateness and face validity; (4) generic recommendations of feasible instruments for each core outcome. This team includes a lived experience research partner group, clinicians and researchers, to support each step of the methodology and dissemination of findings. Ethics and dissemination Ethical approval is not required for this systematic review. The results of the review will be reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 statement. The findings will be reported in an open access publication and in a plain language summary document.