An observational cohort study of numbers and causes of preventable general hospital admissions in people with and without intellectual disabilities in England.

BACKGROUND: Hospital admissions for preventable reasons [ambulatory care sensitive (ACS) conditions] can indicate gaps in access to or quality of primary care. This paper seeks to document the numbers and causes of these admissions in England for people with intellectual disabilities (ID) compared with those without. METHODS: Observational cohort study of number and duration of emergency admitted patient episodes for ACS conditions, overall and by cause, using the Clinical Practice Research Datalink GOLD primary care database and the linked Hospital Episode Statistics Admitted Patient Care dataset. RESULTS: The study covered 5.2% of the population of England from April 2010 to March 2014 giving a total population base of 59 280 person-years for people with ID and 11 103 910 for people without identified ID. The rate of emergency admissions for ACS conditions for people with ID was 77.5 per 1000 person-years. As a crude comparison, this was 3.0 times the rate for those without ID, but standardising for the distinct demography of this group, the number of episodes was 4.8 times that expected if they had the same age-specific and sex-specific rates. Stay durations for these episodes were longer for both young-age and working-age people with ID. Overall people with ID used 399.8 bed-days per 1000 person-years. As a crude comparison, this is 2.8 times the figure for people without ID. Standardising for their age and sex profile, it is 5.4 times the number expected if they had the same age-specific and sex-specific rates. For patients with ID, 16.6% (one in six) of all admitted patient episodes and 24.3% (one in four) of in-patient care days for people with ID were for ACS conditions. Corresponding figures for those without ID were 8.3% (one in 12) and 14.4% (one in seven). The difference in rates between those with and without ID was most marked in people of working age. The three most common causes of emergency episodes for ACS conditions in people with ID were convulsions and epilepsy, influenza pneumonia and aspiration pneumonitis. Influenza pneumonia was also a common cause for people without ID. Episodes for convulsions and epilepsy and aspiration pneumonitis were specifically associated with people with ID. CONCLUSIONS: Rates of hospital admissions for ACS conditions provide an important indicator of health literacy, basic self-care (or support by carers) and the accessibility of primary care. High rates are seen for some conditions specifically associated with premature death in people with ID. Local monitoring of these figures could be used to indicate the effectiveness of local primary health services in providing support to people with ID.

An observational study of the use of acute hospital care by people with intellectual disabilities in England.

INTRODUCTION: Providing safe, high-quality admitted-patient care for people with intellectual disabilities (IDs) requires consideration for their special needs particularly in relation to communication and consent. To make allowance for these special requirements, it would be helpful for hospitals to know how often they are likely to arise. This study set out to identify the amount and patterns of use of acute, non-psychiatric hospital admitted-patient care in England by people with ID. Patterns are considered in relation to clinical specialties, modes of admission (emergency or planned) and life stages (children and young people, working age and older adults). In each case, patterns for people with ID are compared with patterns for those without. METHODS: Descriptive observational study using a major general practitioner (GP) research database (Clinical Practice Research Datalink GOLD) linked to routine national statistical records of admitted-patient care. RESULTS: Overall people identified by their GP as having ID had higher rates of admitted-patient care episodes and longer durations of stay than those without. Differences varied considerably between clinical specialties with rates more elevated in medical and paediatric than surgical specialties. Admitted-patient care rates for women with ID in obstetrics and gynaecology were lower than for other women, while rates for admitted-patient dental care were much higher for both men and women with ID. In an average English health administrative area with a local population of 250 000 people, at any time, there are likely to be approximately 670 people receiving acute admitted-patient care. Approximately six of these are likely to have been identified by their GP as having ID. At 0.9% of hospital in-patients, this is just under twice the proportion in the population. CONCLUSION AND IMPLICATIONS: Our figures are likely to be an underestimate as GP identification of people with ID is known to be far from complete. However, they indicate that the number of people with ID in acute hospital settings is likely to be substantially more than a recent survey of English health services indicated they were aware of. The study is intended to help guide expectations for acute hospitals seeking to audit the completeness of their identification of people with ID and to indicate their likely distribution between clinical specialties.

Mortality in people with intellectual disabilities in England.

BACKGROUND: People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England. METHOD: We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause. RESULTS: Mortality rates for people with ID were significantly higher than for those without. Their all-cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA. CONCLUSIONS: National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.