Knowledge Library

Pain experience of adults with intellectual disabilities – caregiver reports

System(s) of support:
Target Group(s):
Age Group(s):

Article summary


Pain is a problem for individuals with intellectual and developmental disability (IDD), secondary to their impairments, due to invasive medical procedures that these individuals undergo on a regular basis. Current literature indicates pain as a common experience for children with IDD, yet no such reports have been made in regard to adults with IDD.


This study aimed (1) to re-establish the reliability of caregivers as proxy observers; (2) to evaluate the pain experience of adults with IDD by caregivers’ proxy report; and (3) to assess the sensitivity of the Non-Communicating Adult Pain Checklist (NCAPC) as a pain scale for chronic pain (CP) in individuals with IDD.


Frothy-three caregivers, working for more than 3 years with adults with IDD, performed pain assessments of 187 individuals living in a residential facility. Two caregivers evaluated whether each resident suffers from pain and assessed the intensity, causes and duration of pain experience. Furthermore, 52/187 residents [26 with CP and 26 pain free (PF) based on medical record and caregiver reports] were evaluated by an additional seven caregivers using the NCAPC in order to establish the reliability of caregivers as proxy observers.


According to caregivers’ report, 48% of adults with IDD suffer from pain at a mean level of 6/10, with more than 10% suffering from high levels of pain on a constant basis. Inter-rater agreement was found mostly high with intraclass correlation values ranging between 0.73 and 0.93. Using the NCAPC, we were able to identify CP and PF individuals with a significant score difference (P = 0.003).


The results support the use of the NCAPC as a scale to evaluate CP in adults with IDD. The findings reiterate the reliability of caregivers as proxy observers and the importance of involving them in identifying pain behaviours of their protégées. Our findings reiterate the need for an immediate action for appropriate pain management protocols for adult with IDD.

Link to the article:
CLick here to open article