The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs

Abstract

Background Adults with intellectual disabilities (ID) experience a wide range of eating, drinking and/or swallowing (EDS) problems, for which they receive diverse mealtime support interventions. Previous research has estimated that dysphagia (difficulty swallowing) affects 8% of all adults with ID and that 15% require some form of mealtime support. People with ID (whether they require mealtime support or not) also experience a greater burden of ill health and die younger than their peers in the general population with no ID. Methods Using an exploratory, population-based cohort study design, we set out to examine healthrelated outcomes in adults with ID who receive mealtime support for any eating, drinking or swallowing problem, by establishing the annual incidence of healthcare use, EDS-related ill health, and all-cause mortality. This study was conducted in two counties in the East of England.

An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database

“…107 Neither found an increase in consultation among their adults with ID when the authors compared their study results with expected consultation levels estimated using national data. 108 Our study has the advantage of directly comparing consultation behaviour within practices, accounting for any practice variations or trends.…”

Hospital admissions for respiratory system diseases in adults with intellectual disabilities in Southeast London: a register-based cohort study

“…5 Although published research to date has focused on people with a wide range of severity for ID, restrictions by small samples, short follow-up periods and limited sample representativeness existed. [19][20][21][22][23] Specifically, an elevated risk of mortality from bronchopneumonia of around 6.5-fold was reported in a cohort with moderate to severe ID in the UK, 21 and respiratory infection was found the most common cause of death over a 1-year period in a UK cohort of adults with ID receiving mealtime support for any eating, drinking or swallowing problem. 20 In a Taiwanese institutional sample of people with ID followed for up to 4 years, pneumonia was the topmost reason for hospitalisation.…”

“…[19][20][21][22][23] Specifically, an elevated risk of mortality from bronchopneumonia of around 6.5-fold was reported in a cohort with moderate to severe ID in the UK, 21 and respiratory infection was found the most common cause of death over a 1-year period in a UK cohort of adults with ID receiving mealtime support for any eating, drinking or swallowing problem. 20 In a Taiwanese institutional sample of people with ID followed for up to 4 years, pneumonia was the topmost reason for hospitalisation. 19 Another study in Canada reported a more than twofold adjusted relative risk of asthma admission of people with ID, identified by population-based medical and educational databases, comparing to people without ID.…”

Clinical services for adults with an intellectual disability and epilepsy: A comparison of management alternatives

“…This is potentially concerning, particularly as only 30% (91/306) of eligible patients consented. However, low consent rates are not unusual for research in ID: in Perez et al [26]–a study looking at adverse outcomes in adults with ID and mealtime support—only 142 consent to take part out of an identified population of 726, a rate of 20%. It is difficult to recruit from the ID population for many reasons, such as the capacity to consent and, relatedly, the frequent need to include family and carers in the research.…”