Reporting of health problems and pain by adults with an intellectual disability and by their carers

Background: Information about the health of people with ID is usually obtained from professionals and carers. Little is known about what health problems people with ID report they experience, and whether this differs from their carers’ reports. Method: A secondary analysis of health information provided by participants with ID and/or their matched carers as part of a health intervention RCT using inclusive methodology. Results: Health information from 98 participants with ID is presented. Less than three quarters of participants said they had someone to talk to about their health (68/93). Pain was reported by 67% (66/98) with 18% (17/95) saying they did not tell anyone when in pain, and 27% (26/97) they did not take pain relief medication. Matched carer data for 59 participants indicated similar numbers of health problems reported by participants as by their carers when prompted with specific problems. Participants reported more headaches and allergies, but fewer weight problems than their carers. Concordance was poor for many problems. Conclusion: Participants reported experiencing a lot of health and mental health problems including pain. This information from adults with ID is rarely collected, either in research or in routine clinical practice