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

Abstract

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
JournalPain Medicine
Volume18
Issue number7
Early online date1 Oct 2016
DOIs
Publication statusPublished - Jul 2017

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Down Syndrome
Pain
Self Report
Population Control
Acute Pain
Pain Measurement
Intellectual Disability
Netherlands
Cross-Sectional Studies

Keywords

  • Clinical Significance
  • Down Syndrome
  • Pain Assessment

Cite this

@article{8a33525b404348d5be6997cd73c2fde1,
title = "Self-reported presence and experience of pain in adults with Down syndrome",
abstract = "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.",
keywords = "Clinical Significance, Down Syndrome, Pain Assessment",
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year = "2017",
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}

Self-reported presence and experience of pain in adults with Down syndrome. / de Knegt, N.C.; Lobbezoo, F.; Scherder, E.J.A.; Evenhuis, H.M.; Schuengel, Carlo.

In: Pain Medicine, Vol. 18, No. 7, 07.2017, p. 1247-1263.

Research output: Contribution to JournalArticleAcademicpeer-review

TY - JOUR

T1 - Self-reported presence and experience of pain in adults with Down syndrome

AU - de Knegt, N.C.

AU - Lobbezoo, F.

AU - Scherder, E.J.A.

AU - Evenhuis, H.M.

AU - Schuengel, Carlo

PY - 2017/7

Y1 - 2017/7

N2 - 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.

AB - 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.

KW - Clinical Significance

KW - Down Syndrome

KW - Pain Assessment

U2 - 10.1093/pm/pnw226

DO - 10.1093/pm/pnw226

M3 - Article

VL - 18

SP - 1247

EP - 1263

JO - Pain Medicine

JF - Pain Medicine

SN - 1526-2375

IS - 7

ER -