A systematic review of self and observer assessment of pain and related functioning in youth with brain-based developmental disabilities

Author:

Noyek Samantha1ORCID,Jessa Jenna S.2,Faulkner Violeta3,Boerner Katelynn E.4,Dewan Tammie2,Doyle Dacey,Genik Lara5,Grainger-Schatz Stacy,McMorris Carly6,McMurtry C. Meghan5,Nania Cara G.6,Oberlander Tim7,Lorenzetti Diane1,Turner Kailyn6,Birnie Kathryn A.389

Affiliation:

1. Department of Psychology, University of Calgary, Calgary, AB, Canada

2. Cumming School of Medicine, University of Calgary, Calgary, AB, Canada

3. Department of Anesthesiology, University of Calgary, Calgary, AB, Canada

4. Department of Psychology, University of British Columbia, BC, Canada

5. Department of Psychology, University of Guelph, ON, Canada

6. Werklund School of Education, University of Calgary, Calgary, AB, Canada

7. Department of Pediatrics, University of British Columbia, BC, Canada

8. Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada

9. Alberta Children's Hospital Research Institute, AB, Canada

Abstract

AbstractPain experiences of youth with brain-based developmental disabilities are often overlooked and/or misinterpreted, increasing the risk for poor or inadequate pain assessment and management. Ample measures exist to assess acute and chronic pain, yet their utility and frequency of use in youth with brain-based developmental disabilities is unclear and available measures do not have strong measurement properties for this diverse group. This systematic review identified the scope of self-reported and observer-reported pain assessment in studies of youth (aged 3-24 years) with brain-based developmental disabilities (phase 1) and summarized other measures of pain-related functioning for acute and chronic pain (ie, physical, emotional, social, sleep, and quality of life, within the subset of quantitative studies focused primarily on pain, phase 2). A comprehensive search for English-language studies was conducted in August 2022 in Web of Science, CINAHL, MEDLINE, Cochrane CENTRAL, EMBASE, and APA PsychINFO (PROSPERO registration: CRD42021237444). A total of 17,029 unique records were screened. Of the 707 articles included in phase 1, most assessed chronic pain (n = 314; 62.0%) and primarily used observer-report (n = 155; 31%) over self-report (n = 67; 13%). Of the 137 articles included in phase 2, other outcomes assessed alongside pain intensity included motor ability (16.8%), adaptive functioning (11%), quality of life (8%), pain interference (6.6%), mental health (5.8%), and communication ability (2.9%). Cerebral palsy was the most common population in both phase 1 (n = 343; 48.5%) and phase 2 (n = 83; 59.7%). This review provides a foundational understanding of pain assessment in brain-based developmental disabilities and highlights continued inequities in holistic pain assessment for this population.

Publisher

Ovid Technologies (Wolters Kluwer Health)

Subject

Anesthesiology and Pain Medicine,Neurology (clinical),Neurology

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