Primary healthcare interventions for people with intellectual disability

Abstract

Background People with intellectual disability, approximately 3% of the population, experience poorer health outcomes and a shorter life expectancy than people without disability. There are multiple factors that interact and impact on health status and one of these is healthcare. High quality healthcare can improve population health; however, people with intellectual disability experience deficits in healthcare. Poor health outcomes and inadequate healthcare are unjust and unnecessary and every effort should be made to improve the healthcare and health status of people with intellectual disability. Aim The aim of this study was to identify and explore primary healthcare interventions and their use, as a first step to improve healthcare and health outcomes for people with intellectual disability. Methods and results A systematic review with meta-analysis was conducted to identify primary healthcare interventions targeting several health actions, e.g., blood pressure measurement and vision testing, for people with intellectual disability. The meta-analysis identified ‘health assessments’ significantly increase the number of health actions, which is suggestive of improved healthcare and potentially long-term improvements in health. The comprehensive health assessment program (the CHAP) is an Australian health assessment, which was identified through the systematic review. Several randomised control trails have been conducted in Australia using the CHAP and research suggests this health assessment increases health actions in people with ID. Although never formally assessed, it had been suggested that the effectiveness of the CHAP was underreported in the initial trails, due to the research methodology employed. A study was therefore undertaken to assess whether this speculation was correct, and to further understand the outcomes and potential benefits resulting from the CHAP. Data were collected from three randomised controlled trials investigating the impact of health assessments on health actions. Health action data, as recorded in health assessment booklets, were compared to health action data recorded in GPs’ records. When data were drawn from the CHAP booklets, health assessments were shown to increase health actions in people with intellectual disability to a significantly greater extent than previously demonstrated. This also indicates health assessments improve documentation and recording in a population where this is often insufficient. The first two studies support health assessment use in the healthcare of people with intellectual disability. Interestingly, very few people with intellectual disability have had a health assessment, regardless of the benefits. Health assessment use in different populations was explored to better understand health assessment use in Australia. Health assessment uptake and barriers to uptake were identified and discussed in relation to people with intellectual disability. To conclude, multi-level recommendations were made to reduce these barriers including, incorporating health assessments into the disability and health system to a greater extent, compiling a registry of people with intellectual disability and sending health assessment invitations and call-back letters to these individuals, introducing a more consistent healthcare team for people with intellectual disability and improving education and training. Conclusion This thesis identifies health assessments as a potential intervention to improve healthcare and health outcomes experienced by people with intellectual disability. Recommendations have been made to address the barriers to health assessment uptake in people with intellectual disability, and these should be implemented as a first step towards improving healthcare and health outcomes in this vulnerable population. Further research is recommended to explore real-world implementation and use of health assessments in primary care. Qualitative research may be useful and this could include investigating perceived health assessment pros’ and cons,’ and accessibility difficulties. The impact of health assessments on long-term health outcomes should also be investigated e.g., can health assessments reduce hospitalisation rate and premature mortality. This research is of particular importance given the current political climate in Australia, and the aims of this thesis map onto current social and political directions and priorities. These thesis findings are consistent with Australian government reports on this topic, and thus outcomes and recommendations can be used to inform multi-level changes to advance the health and healthcare of people with intellectual disability.