Self-Reported Presence and Experience of Pain in Adults with Down Syndrome.
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.


METHODS
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.
Department of Clinical Neuropsychology, VU University, Amsterdam, the Netherlands.
Nanda C
NC
de Knegt
Department of Oral Kinesiology, Academic Center for Dentistry Amsterdam (ACTA), University of Amsterdam and VU University Amsterdam, MOVE Research Institute Amsterdam, Amsterdam, the Netherlands.
Frank
F
Lobbezoo
Department of Clinical Child and Family Studies and EMGO+ Institute for Health and Care Research.
Carlo
C
Schuengel
Department of General Practice, Erasmus MC, University Medical Center, Rotterdam, the Netherlands.
Heleen M
HM
Evenhuis
Department of Clinical Neuropsychology, VU University, Amsterdam, the Netherlands.
Erik J A
EJA
Scherder
D000293:Adolescent; D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D004314:Down Syndrome / Q000453:epidemiology* / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D010146:Pain / Q000175:diagnosis* / Q000453:epidemiology* / Q000523:psychology; D010147:Pain Measurement / Q000379:methods* / Q000523:psychology; D057566:Self Report; D055815:Young Adult
Clinical Significance; Down Syndrome; Pain Assessment