Abstract
People with intellectual disabilities (IDs) have a higher risk of painful medical
conditions. Partly because of the impaired ability to communicate about it, pain is
often undertreated. To strengthen pain assessment in this population, we conducted
a systematic review to identify behavioral pain indicators in people with IDs by using
Embase, PubMed, PsycINFO, CINAHL, and Cochrane. Inclusion criteria were 1) scientific
papers; 2) published in the last 20 years, that is, 1992 to 2012; 3) written in English,
4) using human subjects, 5) intellectual disabilities, 6) pain, 7) behavior, and 8)
an association between observable behavior and pain experience. From 527 publications,
27 studies were included. Pain was acute in 14 studies, chronic in 2 studies, both
acute and chronic in 2 studies, and unspecified in 9 studies. Methodological quality
was assessed with the Mixed Methods Appraisal Tool. Of the 14 categories with behavioral
pain indicators, motor activity, facial activity, social-emotional indicators, and
nonverbal vocal expression were the most frequently reported. Most of the behavioral
pain indicators are reported in more than 1 study and form a possible clinical relevant
set of indicators for pain in people with IDs. Determination of a behavioral pattern
specific for pain, however, remains a challenge for future research.
Perspective
This review focuses on categories of behavior indicators related to pain in people
with IDs. The quality of evidence is critically discussed per category. This set of
indicators could potentially help clinicians to recognize pain in this population,
especially when unique individual pain responses are also identified.
Key words
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Article info
Publication history
Published online: July 08, 2013
Footnotes
The PhD project of N. C. de Knegt (“Pain and Cognition in Adults With Down Syndrome”) is possible due to funding of the following Dutch organizations: Fonds NutsOhra, Fonds Verstandelijk Gehandicapten, Innovatiekring Zorgverzekeraars, and Alzheimer Nederland.
There are no conflicts of interest to report for any of the authors.
Supplementary data accompanying this article are available online at www.jpain.org and www.sciencedirect.com.
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© 2013 American Pain Society. Published by Elsevier Inc. All rights reserved.
