Fay J. Hosking

Mortality among adults with intellectual disability in England : comparisons with the general population

OBJECTIVES To describe mortality among adults with intellectual disability in England in comparison with the general population. METHODS We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths). RESULTS Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8). CONCLUSIONS Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability.

Health characteristics and consultation patterns of people with intellectual disability: a cross-sectional database study in English general practice

Background People with intellectual disability (ID) are a group with high levels of healthcare needs; however, comprehensive information on these needs and service use is very limited. Aim To describe chronic disease, comorbidity, disability, and general practice use among people with ID compared with the general population. Design and setting This study is a cross-sectional analysis of a primary care database including 408 English general practices in 2012. Method A total of 14 751 adults with ID, aged 18–84 years, were compared with 86 221 age-, sex- and practice-matched controls. Depending on the outcome, prevalence (PR), risk (RR), or odds (OR) ratios comparing patients with ID with matched controls are shown. Results Patients with ID had a markedly higher prevalence of recorded epilepsy (18.5%, PR 25.33, 95% confidence interval [CI] = 23.29 to 27.57), severe mental illness (8.6%, PR 9.10, 95% CI = 8.34 to 9.92), and dementia (1.1%, PR 7.52, 95% CI = 5.95 to 9.49), as well as moderately increased rates of hypothyroidism and heart failure (PR>2.0). However, recorded prevalence of ischaemic heart disease and cancer was approximately 30% lower than the general population. The average annual number of primary care consultations was 6.29 for patients with ID, compared with 3.89 for matched controls. Patients with ID were less likely to have longer doctor consultations (OR 0.73, 95% CI = 0.69 to 0.77), and had lower continuity of care with the same doctor (OR 0.77, 95% CI = 0.73 to 0.82). Conclusion Compared with the general population, people with ID have generally higher overall levels of chronic disease and greater primary care use. Ensuring access to high-quality chronic disease management, especially for epilepsy and mental illness, will help address these greater healthcare needs. Continuity of care and longer appointment times are important potential improvements in primary care.

Risk of Infection in Type 1 and Type 2 Diabetes Compared With the General Population: A Matched Cohort Study

OBJECTIVE We describe in detail the burden of infections in adults with diabetes within a large national population cohort. We also compare infection rates between patients with type 1 and type 2 diabetes mellitus (T1DM and T2DM). RESEARCH DESIGN AND METHODS A retrospective cohort study compared 102,493 English primary care patients aged 40–89 years with a diabetes diagnosis by 2008 (n = 5,863 T1DM and n = 96,630 T2DM) with 203,518 age-sex-practice–matched control subjects without diabetes. Infection rates during 2008–2015, compiled from primary care and linked hospital and mortality records, were compared across 19 individual infection categories. These were further summarized as any requiring a prescription or hospitalization or as cause of death. Poisson regression was used to estimate incidence rate ratios (IRRs) between 1) people with diabetes and control subjects and 2) T1DM and T2DM adjusted for age, sex, smoking, BMI, and deprivation. RESULTS Compared with control subjects without diabetes, patients with diabetes had higher rates for all infections, with the highest IRRs seen for bone and joint infections, sepsis, and cellulitis. IRRs for infection-related hospitalizations were 3.71 (95% CI 3.27–4.21) for T1DM and 1.88 (95% CI 1.83–1.92) for T2DM. A direct comparison of types confirmed higher adjusted risks for T1DM versus T2DM (death from infection IRR 2.19 [95% CI 1.75–2.74]). We estimate that 6% of infection-related hospitalizations and 12% of infection-related deaths were attributable to diabetes. CONCLUSIONS People with diabetes, particularly T1DM, are at increased risk of serious infection, representing an important population burden. Strategies that reduce the risk of developing severe infections and poor treatment outcomes are under-researched and should be explored.

Do health checks for adults with intellectual disability reduce emergency hospital admissions? Evaluation of a natural experiment

Background Annual health checks for adults with intellectual disability (ID) have been incentivised by National Health Service (NHS) England since 2009, but it is unclear what impact they have had on important health outcomes such as emergency hospitalisation. Methods An evaluation of a ‘natural experiment’, incorporating practice and individual-level designs, to assess the effectiveness of health checks for adults with ID in reducing emergency hospital admissions using a large English primary care database. For practices, changes in admission rates for adults with ID between 2009–2010 and 2011–2012 were compared in 126 fully participating versus 68 non-participating practices. For individuals, changes in admission rates before and after the first health check for 7487 adults with ID were compared with 46 408 age-sex-practice matched controls. Incident rate ratios (IRRs) comparing changes in admission rates are presented for: all emergency, preventable emergency (for ambulatory care sensitive conditions (ACSCs)) and elective emergency. Results Practices with high health check participation showed no change in emergency admission rate among patients with ID over time compared with non-participating practices (IRR=0.97, 95% CI 0.78 to 1.19), but emergency admissions for ACSCs did fall (IRR=0.74, 0.58 to 0.95). Among individuals with ID, health checks had no effect on overall emergency admissions compared with controls (IRR=0.96, 0.87 to 1.07), although there was a relative reduction in emergency admissions for ACSCs (IRR=0.82, 0.69 to 0.99). Elective admissions showed no change with health checks in either analysis. Conclusions Annual health checks in primary care for adults with ID did not alter overall emergency admissions, but they appeared influential in reducing preventable emergency admissions.

Preventable Emergency Hospital Admissions Among Adults With Intellectual Disability in England

PURPOSE Adults with intellectual disabilities experience poorer physical health and health care quality, but there is limited information on the potential for reducing emergency hospital admissions in this population. We describe overall and preventable emergency admissions for adults with vs without intellectual disabilities in England and assess differences in primary care management before admission for 2 common ambulatory care–sensitive conditions (ACSCs). METHODS We used electronic records to study a cohort of 16,666 adults with intellectual disabilities and 113,562 age-, sex-, and practice-matched adults without intellectual disabilities from 343 English family practices. Incident rate ratios (IRRs) from conditional Poisson regression were analyzed for all emergency and preventable emergency admissions. Primary care management of lower respiratory tract infections and urinary tract infections, as exemplar ACSCs, before admission were compared in unmatched analysis between adults with and without intellectual disabilities. RESULTS The overall rate for emergency admissions for adults with vs without intellectual disabilities was 182 vs 68 per 1,000 per year (IRR = 2.82; 95% CI, 2.66–2.98). ACSCs accounted for 33.7% of emergency admissions among the former compared with 17.3% among the latter (IRR = 5.62; 95% CI, 5.14–6.13); adjusting for comorbidity, smoking, and deprivation did not fully explain the difference (IRR = 3.60; 95% CI, 3.25–3.99). Although adults with intellectual disability were at nearly 5 times higher risk for admission for lower respiratory tract infections and urinary tract infections, they had similar primary care use, investigation, and management before admission as the general population. CONCLUSIONS Adults with intellectual disabilities are at high risk for preventable emergency admissions. Identifying strategies for better detecting and managing ACSCs, including lower respiratory and urinary tract infections, in primary care could reduce hospitalizations.

'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study.

Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups’ unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.

Learning disability registers in primary care

We thank Russell and House for raising an important issue that we lacked space to discuss in our paper.1 Although we noted that ‘practices may not identify all [intellectual disability] ID individuals, especially those with mild ID’, it was not our intention to underestimate this difficult task. Adults with ID not known to primary care in England have been described as a ‘hidden majority’, due to administrative health systems failing to detect a …

Glycemic Control and Risk of Infections Among People With Type 1 or Type 2 Diabetes in a Large Primary Care Cohort Study

OBJECTIVE Diabetes mellitus (DM) increases the risk of infections, but the effect of better control has not been thoroughly investigated. RESEARCH DESIGN AND METHODS With the use of English primary care data, average glycated hemoglobin (HbA1c) during 2008–2009 was estimated for 85,312 patients with DM ages 40–89 years. Infection rates during 2010–2015 compiled from primary care, linked hospital, and mortality records were estimated across 18 infection categories and further summarized as any requiring a prescription or hospitalization or as cause of death. Poisson regression was used to estimate adjusted incidence rate ratios (IRRs) by HbA1c categories across all DM, and type 1 and type 2 DM separately. IRRs also were compared with 153,341 age-sex-practice–matched controls without DM. Attributable fractions (AF%) among patients with DM were estimated for an optimal control scenario (HbA1c 6–7% [42–53 mmol/mol]). RESULTS Long-term infection risk rose with increasing HbA1c for most outcomes. Compared with patients without DM, those with DM and optimal control (HbA1c 6–7% [42–53 mmol/mol], IRR 1.41 [95% CI 1.36–1.47]) and poor control (≥11% [97 mmol/mol], 4.70 [4.24–5.21]) had elevated hospitalization risks for infection. In patients with type 1 DM and poor control, this risk was even greater (IRR 8.47 [5.86–12.24]). Comparisons within patients with DM confirmed the risk of hospitalization with poor control (2.70 [2.43–3.00]) after adjustment for duration and other confounders. AF% of poor control were high for serious infections, particularly bone and joint (46%), endocarditis (26%), tuberculosis (24%), sepsis (21%), infection-related hospitalization (17%), and mortality (16%). CONCLUSIONS Poor glycemic control is powerfully associated with serious infections and should be a high priority.

OP50 Disparities in Mortality and Deaths Amenable to Healthcare Intervention in Adults with Intellectual Disability

Background It is widely recognised that people with intellectual disability (ID) experience poorer health, access to healthcare and life expectancy. However there is limited accurate population-based information on their mortality, which is crucial to forming strategies to reduce premature deaths. We examined mortality in a large unselected group of adults with ID, with a focus on those deaths considered potentially avoidable. Potentially avoidable deaths are widely used as a means of assessing healthcare systems, as they are deaths which could have been avoided by good quality healthcare (sub-defined as amenable) or public health interventions (sub-defined as preventable). Methods We described the mortality experience of adults with ID compared to the general population using novel linkage of two national databases, namely general practice data from the Clinical Practice Research Datalink (CPRD) and ONS mortality data. We used a matched cohort study from 343 English general practices between 2009 and 2013. 16,666 adults with ID (656 deaths) aged 18–84 were compared to 113,562 age, sex and practice matched controls (1,358 deaths). Outcomes of all-cause and cause specific mortality as well as deaths considered potentially avoidable, were examined using stratified Cox regression in SAS. Results Adults with ID had higher mortality rates than controls (Hazard Ratio (HR) = 3.6, 95% CI = 3.3–3.9) which remained high after adjusting for co-morbidities, smoking and deprivation (HR = 3.1, 2.7–3.4). The higher mortality rate compared to controls was greater among ID adults with Down’s syndrome (HR = 9.2, 7.2–11.8) and epilepsy (HR = 6.0, 5.0–7.2). Almost all cause specific rates were higher for ID adults, with greatest increases (HR > 10) for genitourinary and nervous system diseases/disorders. While potentially avoidable deaths constituted similar percentages of overall mortality in both the ID group (46.3%) and controls (47.5%), the contribution from deaths classified as amenable was very different; 37.0% of all deaths in the ID group compared to 22.5% in the controls. This difference was reflected in the HR for deaths amenable to healthcare (HR = 5.1, 4.5–5.8) in contrast to the other subcategory of avoidable deaths (Preventable deaths HR = 1.7, 1.49–2.0). Conclusion Mortality among adults with ID is markedly elevated compared to the general population. This disparity is particularly prominent in deaths which are considered potentially avoidable through good quality healthcare. This mortality disparity may be an indicator of healthcare inequality and effectiveness; therefore strategies are needed to improve access and quality of healthcare for people with ID.