Self-reported presence and experience of pain in adults with Down syndrome

N.C. de Knegt, F. Lobbezoo, E.J.A. Scherder, H.M. Evenhuis, Carlo Schuengel

Research output: Contribution to JournalArticleAcademicpeer-review


Objective: The aim was to examine whether the presence of pain (based on physical conditions and participants' report) and self-reported pain experience in adults with Down syndrome (DS) differ from general population controls.

Design: Cross-sectional study of 224 adults with DS (mean age = 38.1 years, mild-severe intellectual disabilities) and 142 age-matched controls (median age = 40.5 years, mean estimated IQ = 105.7) in the Netherlands.

Methods: File-based medical information was evaluated. Self-reported presence and experience of pain were assessed in rest and after movement during a test session (affect with facial affective scale (FAS: 0.04-0.97), intensity assessed with numeric rating scale (NRS: 0-10).

Results: Compared with controls, more DS participants had physical conditions that may cause pain and/or discomfort ( p  = .004, 50% vs 35%), but fewer DS participants reported pain during the test session ( p  = .003, 58% vs 73%). Of the participants who indicated pain and comprehended self-reporting scales ( n  = 198 FAS, n  = 161 NRS), the DS group reported a higher pain affect and intensity than the controls ( p  < .001, FAS: 0.75-0.85 vs 0.50-0.59, NRS: 6.00-7.94 vs 2.00-3.73).

Conclusions: Not all adults with DS and painful/discomforting physical conditions reported pain. Those who did indicated a higher pain experience than adults from the general population. Research into spontaneous self-report of pain, repeated pain assessment, and acute pain is needed in people with DS for more insight into pain experience and mismatches between self-report and medical information.

Original languageEnglish
Pages (from-to)1247-1263
Number of pages17
JournalPain medicine
Issue number7
Early online date1 Oct 2016
Publication statusPublished - Jul 2017


  • Clinical Significance
  • Down Syndrome
  • Pain Assessment


Dive into the research topics of 'Self-reported presence and experience of pain in adults with Down syndrome'. Together they form a unique fingerprint.

Cite this