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