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Assessing the impact of pain on emotional wellbeing has been neglected for children and young people with a neurodevelopmental disability. Our research aims to address this with this systematic review as the first step. The aims was to systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0–24 years) with a neurodevelopmental disability.
A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted to identify: 1) pain coping tools used in neurodevelopmental disability, and 2) studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines.
Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool.
The conclusion reached was that pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.
The citation for this article is:
Smith NL, Smith MG, Gibson N, Imms C, Thornton Al, Harvey AR. Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties. Dev Med Child Neurol.2022;00:1–11. https://doi.org/10.1111/dmcn.15410
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