A prospective study of hospital episodes of adults with intellectual disability

Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

Background: Previous research has shown poor hospital experiences and dire outcomes for people with intellectual disability. The main objective of this study was to prospectively track episodes for adults with intellectual disability (ID) in Australian hospitals, with a focus on indications of the quality of care provided.

Methods: A prospective audit of hospital records over 35 months yielded quantitative data about patient characteristics, frequency and length of hospital episodes, diagnostic assessments and outcomes, post-emergency department (ED) destinations and post-discharge recommendations. Fifty participants were recruited largely by identification on hospital ED entry. An audit of patients' hospital records was conducted towards the end of hospital episodes, using a tool developed for the study.

Results: Participants were mostly men (70%), aged 42.9 years on average, living mostly with family (46%) or in supported accommodation (44%). Of 157 recorded episodes, 96% started in ED, 85% required urgent or semi-urgent care and 62% were in the first 3 months of study participation. Average time in ED exceeded the 4-h national benchmark, met in 40% of episodes. One or more diagnostic assessments were conducted in 91% episodes and others in short stay units. Almost half (49%) resulted in a ward stay. With an extreme data point removed, <1–35 days were spent in wards. The most frequent diagnosis in 75% of episodes was for digestive problems, followed by nervous system problems then injuries. Median length of bed stays reflected data available for Australian refined diagnosis-related groups. High hospital re-presentations were found: for 67% of episodes in total, 26% (n = 12) of which were within 72 h and 59% (n = 23) within 30 days.

Conclusions: Adults with ID presented frequently to ED and often had lengthy stays. We found no indication of poor care practices in terms of hospital staff willingness to keep patients in ED and conduct of diagnostic assessments. Frequent re-presentations, however, indicated failed hospital care at some level.