Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties. (16th September 2022)

• Record Type: Journal Article
• Authors: Smith, Nadine L.; Smith, Meredith G.; Gibson, Noula; Imms, Christine; Thornton, Ashleigh l.; Harvey, Adrienne R.
• Is Part Of: Developmental medicine & child neurology. Volume 65:Number 3(2023)
• Page Start: 318
• Page End: 328
• Publication Date: 2022-09-16
• Subjects: Child development -- Periodicals; Pediatric neurology -- Periodicals; 616.8
• DOI: 10.1111/dmcn.15410
• Languages: English
• ISSNs: 0012-1622

Abstract

Abstract: Aim: 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. Method: A two‐stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional 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 (PROSPERO protocol registration no. CRD42021273031). Results: 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. Interpretation: 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. Abstract :