Behavioral pain indicators for adults with intellectual disability: a scoping review

OBJECTIVE: This scoping review aimed to identify and map behavioral pain indicators observed when adults with intellectual disability experience pain. INTRODUCTION: Adults with an intellectual disability have more health problems than the general population. The likelihood that they experience pain is high, but intellectual disability can hinder verbal expression of pain. Pain may be exhibited through behavioral indicators, but because no behavioral pain scale exists for this population, observers may misinterpret their expression of pain. ELIGIBILITY CRITERIA: This review considered studies involving adults (≥18 years) with any type of intellectual disability, published from 2000 onward. Studies including both adults and children with intellectual disability in their sample were included. The concept of interest was behavioral pain indicators related to any type of pain. The context included any country and care setting. This review considered all primary studies and secondary sources that did not refer to primary studies already included. METHODS: The review was conducted according to the JBI methodology for scoping reviews. A preliminary search strategy focusing on the concepts of intellectual disability and pain measurement was prepared for PubMed and CINAHL (EBSCOhost). Searches were then carried out in PubMed, CINAHL (EBSCOhost), Embase.com, JBI Evidence-based Practice Database (Ovid), Cochrane Database of Systematic Reviews, APA PsycINFO (Ovid), ERIC (Ovid), Web of Science Core Collection, ProQuest Dissertations and Theses Index (Web of Science), Google Scholar, MedNar, and websites of relevant professional associations. Two reviewers independently screened titles, abstracts, and full texts. Extracted data were charted, and identified behaviors were classified into 14 behavioral categories. RESULTS: A total of 92 sources (84 primary studies and 8 secondary sources) were included, identifying 359 behavioral pain indicators reported by caregivers or adults with intellectual disability. Indicators were grouped into motor, facial, socio-emotional, nonverbal vocal, verbal, physiological, and other behavioral domains. Motor indicators included changes in tone, posture, activity level, guarding, and tactile sensitivity in touching. Facial indicators involved global or localized facial expressions. Socio-emotional indicators included mood alterations, modified interactions, resistance to care, and use of specific pain-related sounds or words. Nonverbal vocalizations (eg, yelling, laughing, cessation of vocalization) and verbal expressions (eg, self-report pain scales, altered communication) were reported. Physiological changes included alterations in skin color, respiration, heart rate, blood pressure, and gastrointestinal or urinary function. Additional indicators comprised self-injurious behavior; aggression; agitation; changes in eating, drinking, or sleeping; decline in daily living skills; exacerbation of usual symptoms of the disability; response to analgesic or non-pharmacological treatment; and stereotyped movements. CONCLUSION: Behavioral pain indicators in adults with intellectual disability cover sensory, emotional, cognitive, and social dimensions of pain. As many of these behaviors may increase, decrease, or disappear, and may involve part or all of the body, assessment should rely on comparison with the individual's baseline functioning to support accurate pain identification. REVIEW REGISTRATION: OSF https://osf.io/q5k28.