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Background People with intellectual disability are at high risk of developing several health conditions, including epilepsy. Research on the clinical characteristics of people with intellectual disability and epilepsy is abundant. However, their health needs and health service use, which can reflect how they fare in the current health system, remain insufficiently examined. Methods The thesis comprises four studies. The first is a systematic literature review to quantify physical health conditions in people with intellectual disability and derive a detailed understanding of their health status. The remaining retrospective cohort studies were based on linked administrative datasets from health and disability services in the jurisdiction of New South Wales (NSW), Australia. Individuals aged 5-64 years with a diagnosis of epilepsy were identified from NSW hospital admission data, and diagnoses of intellectual disability were ascertained from disability and health service records. The studies examined and compared the risk of rehospitalisation and emergency department (ED) presentation after epilepsy hospitalisation and mortality in people with and without intellectual disability. Factors associated with hospital use and mortality were also investigated for those with both diagnoses. Results The systematic review added new knowledge about the risk of physical health conditions in people with intellectual disability. It identified conditions of the highest risk, including epilepsy, and conditions likely being under-detected. The linked data projects revealed that 1) intellectual disability is independently associated with a higher risk of readmission and ED presentation after epilepsy hospitalisation; 2) lower socioeconomic status and certain comorbidities are associated with an increased risk of repeat hospital use; 3) intellectual disability in people with epilepsy is associated with an increased mortality risk and a different cause of death profile. Disability and health characteristics are the main risk factors for death. Conclusions The studies generated new evidence of disparity in epilepsy-related health service use and outcomes between people with and without intellectual disability. The novel findings provide a foundation for improved clinical services provision. To better understand unmet health needs of people with intellectual disability and epilepsy, future research should investigate the use and the drivers of primary and outpatient care and antiepileptics in this population. |
