Prevalence of pain in institutionalized adults with intellectual disabilities: A cross-sectional approach

• Caregivers of adults with intellectual disabilities probably underestimate pain prevalence.
• Many residents considered to be in pain received no analgesics.
• Pain treatment might improve from regular pain assessments.

Information about pain prevalence in institutionalized individuals with intellectual disabilities is scarce, most likely because communication problems impede pain assessment. We aimed to inventory pain prevalence and actual pain management in intellectually disabled individuals living in a representative special care facility in the Netherlands.Caregivers rated the residents’ present pain and overall pain during the preceding week on an 11-point numerical rating scale (NRS-11). In addition, behavioral pain assessment was performed with validated pain scales; the Rotterdam Elderly Pain Observation Scale (REPOS) or Checklist Pain Behavior (CPG).Ratings suggested that 47 of the 255 included residents (18%) suffered from pain either at present or during the preceding week, 14 of whom (30%) experienced pain on both occasions. Most of these 47 (85%) residents with pain had no analgesic prescription, not even in the case of severe pain (NRS 7 or higher).Ratings for nearly one out of every five residents suggested they suffered pain. This proportion is lower than in other studies and could imply that caregivers probably underestimate residents’ prevalence of pain. Pain treatment might be inadequate in light of the low percentage of analgesic prescriptions. To prevent unnecessary suffering in institutes for residents with an intellectual disability (ID) we recommend use of a pain protocol including a validated pain measurement instrument.