Driving better healthcare for people with an intellectual disability

An evidence-based assessment tool developed at The University of Queensland is improving health care for people with an intellectual disability.

The Comprehensive Health Assessment Program (CHAP) is helping families, carers, doctors and, importantly, people with intellectual disabilities, to better manage their care needs.

People with an intellectual disability make up approximately three per cent of the Australian population. As well as being more likely to suffer a premature death, they are also more likely to receive inadequate health promotion advice, are less informed about disease prevention, and typically have poorly managed medical conditions.

University of Queensland (UQ) Professor Nick Lennox, formerly Director of the Queensland Centre for Intellectual and Developmental Disability, developed The Comprehensive Health Assessment Program (CHAP) to overcome the barriers to good healthcare faced by people with an intellectual disability.

CHAP is a two-part questionnaire that facilitates collaboration between the person with the intellectual disability, their supporter or carer, and their family doctor or GP. The first part of the questionnaire creates a comprehensive health history and is completed by the family, supporter and/or person with the intellectual disability. This helps GPs to become aware of commonly missed, poorly managed or syndrome specific health conditions that may need to be addressed. The GP then completes the second part of the questionnaire to create an agreed health action plan.

The research

There is strong evidence demonstrating the benefits of the CHAP tool. In three Australian randomised controlled trials (RCTs) — the gold standard for measuring the effectiveness of a health intervention — individuals living in both supported and private accommodation were better off when using CHAP as part of an annual health check. The evidence from the first CHAP study, along with advocacy, resulted in the introduction of a Health Assessments Item in the Medicare Benefits Schedule for people with an intellectual disability.

CHAP has been implemented by various state governments, non-government organisations, including the Endeavour Foundation in Queensland, and in other countries. CHAP is the only tool of its kind to be tested in the Australian healthcare context and to have delivered improved health outcomes.

The importance of CHAP has been recognised by leading international researchers, including Professor Eric Emerson, a globally respected intellectual disability researcher from the UK’s Centre for Disability Research. “The CHAP study contributes to the world literature the most conclusive evidence that health gain resulted from an intervention,” said Professor Emerson.

Randomised controlled trial (RCT) results

It is common for adults with intellectual disabilities to experience up to five or more unrecognised medical conditions that require ongoing medical management. Disease prevention measures – such as cervical screening or vaccination programs – are often inadequate at revealing potential gaps.  As a result of CHAP being performed, researchers noted a substantial increase in the attention that GPs gave to the health needs of adults with intellectual disabilities during routine check-ups.

The CHAP questionnaire prompted a more systematic accumulation of health history and informed more action-based interactions between the adult patients, their carers and their GP. Results from the randomised controlled trials indicated improved levels of health promotion and disease prevention. For example, there was increased detection of previously undiagnosed sensory impairment in vision and hearing. More attention was given to immunisation updates, as well as the identification and management of obesity, and there was more regular implementation of women’s health screening, such as pap smears. Researchers believe use of the CHAP tool helped alleviate barriers to communication and facilitated better delivery of healthcare. They found CHAP stimulated interaction not just between GPs and carers or support workers, but with family members and, vitally, people with intellectual disabilities. CHAP was found to improve knowledge for all those involved about the primary health issues faced by adults with intellectual disabilities.

Since its inception, CHAP has gone from concept to product launch with the support of UniQuest, UQ’s commercialisation company. UniQuest has licensed CHAP to a diverse range of organisations and has made it available on its eShop website.

* Lennox N, Bain C et al. Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial. International Journal of Epidemiology, 2007 Feb; 36(1): 139-46