Aim: To systematically identify and evaluate the measurement properties of patientreported 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 observerreported 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.
Aim
To identify and evaluate psychometric properties of assessment tools for assessing pain interference in children, adolescents, and adults with chronic pain and the inability to self‐report.
Method
The protocol was registered with PROSPERO (CRD42022310102). A search was run in MEDLINE, Embase, and PsycInfo (29th March 2022) to identify articles reporting psychometric properties of pain interference assessment tools for children, adolescents, and adults with chronic pain and the inability to objectively self‐report pain. Retrieved studies were reviewed by two authors (MGS, LCF) and study quality was assessed using COSMIN.
Results
Psychometric properties of 10 pain interference tools were assessed from 33 studies. The Paediatric Pain Profile (PPP) had low‐quality evidence for content validity and internal consistency with children and adolescents who are unable to self‐report. No tools for adults had evidence for content validity and internal consistency. No tool had evidence for all nine psychometric properties.
Interpretation
The PPP is recommended for pain interference assessment in children and adolescents with chronic pain and the inability to self‐report. Few tools are available for adults. Three tools for children (Patient‐Reported Outcome Measurement Information System Pediatric Proxy Pain Interference Scale; Bath Adolescent Pain Questionnaire for Parents; modified Brief Pain Inventory‐Proxy [mBPI]) and three tools for adults (Doloplus‐2; Patient‐Reported Outcome Measurement Information System Pain Interference Scale‐proxy; Brief Pain Inventory‐proxy) are promising but require further investigation.
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