Mortality of People with Intellectual and Developmental Disabilities from Select<scp>US</scp>State Disability Service Systems and Medical Claims Data

Lauer, Emily; McCallion, Philip

doi:10.1111/jar.12191

Cited by 120 publications

(106 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Gender differences that may have an impact on mortality within the population with ID are not well understood. 124 In our study we observed higher age-and gender-adjusted mortality rates for women (139.5 per 10,000 persons per year) than for men (127.3), although no statistical difference remained when we adjusted for differences in comorbidity between the genders. This was similar to a recent US study 124 utilising information from four state level-disability service systems, which found higher mortality rates for women with ID than for men with ID (18.9 vs. 16.2 per 1000).…”

Section: Mortalitymentioning

confidence: 51%

“…124 In our study we observed higher age-and gender-adjusted mortality rates for women (139.5 per 10,000 persons per year) than for men (127.3), although no statistical difference remained when we adjusted for differences in comorbidity between the genders. This was similar to a recent US study 124 utilising information from four state level-disability service systems, which found higher mortality rates for women with ID than for men with ID (18.9 vs. 16.2 per 1000). However, simply comparing overall mortality rates could hide any potential gender disparity, as men of a similar age in the general population may have a higher underlying mortality rate than women from being more likely to engage in higher-risk lifestyles or behaviours, a difference that may not exist within the population with ID.…”

Section: Mortalitymentioning

confidence: 51%

“…However, simply comparing overall mortality rates could hide any potential gender disparity, as men of a similar age in the general population may have a higher underlying mortality rate than women from being more likely to engage in higher-risk lifestyles or behaviours, a difference that may not exist within the population with ID. 124 Therefore, although more deaths are observed among adult men with ID in many studies, 82,122,123,125 when the authors' analyses compare observed mortality with expected deaths in their control populations, using SMRs, they observe much higher expected mortality for women with ID. For example, in the New South Wales study, 123 the authors reported a SMR of 4.26 for women versus a SMR of 2.52 for men, whereas the Leicestershire study 122 produced a similarly higher SMR for women (3.24) compared with men (2.28).…”

Section: Mortalitymentioning

confidence: 99%

See 2 more Smart Citations

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

Carey

Hosking

Harris

et al. 2017

Health Serv Deliv Res

View full text Add to dashboard Cite

Background People with intellectual disability (ID) have poorer health than the general population; however, there is a lack of comprehensive national data describing their health-care needs and utilisation. Annual health checks for adults with ID have been incentivised through primary care since 2009, but only half of those eligible for such a health check receive one. It is unclear what impact health checks have had on important health outcomes, such as emergency hospitalisation. Objectives To evaluate whether or not annual health checks for adults with ID have reduced emergency hospitalisation, and to describe health, health care and mortality for adults with ID. Design A retrospective matched cohort study using primary care data linked to national hospital admissions and mortality data sets. Setting A total of 451 English general practices contributing data to Clinical Practice Research Datalink (CPRD). Participants A total of 21,859 adults with ID compared with 152,846 age-, gender- and practice-matched controls without ID registered during 2009–13. Interventions None. Main outcome measures Emergency hospital admissions. Other outcomes – preventable admissions for ambulatory care sensitive conditions, and mortality. Data sources CPRD, Hospital Episodes Statistics and Office for National Statistics. Results Compared with the general population, adults with ID had higher levels of recorded comorbidity and were more likely to consult in primary care. However, they were less likely to have long doctor consultations, and had lower continuity of care. They had higher mortality rates [hazard ratio (HR) 3.6, 95% confidence interval (CI) 3.3 to 3.9], with 37.0% of deaths classified as being amenable to health-care intervention (HR 5.9, 95% CI 5.1 to 6.8). They were more likely to have emergency hospital admissions [incidence rate ratio (IRR) 2.82, 95% CI 2.66 to 2.98], with 33.7% deemed preventable compared with 17.3% in controls (IRR 5.62, 95% CI 5.14 to 6.13). Health checks for adults with ID had no effect on overall emergency admissions compared with controls (IRR 0.96, 95% CI 0.87 to 1.07), although there was a relative reduction in emergency admissions for ambulatory care-sensitive conditions (IRR 0.82, 95% CI 0.69 to 0.99). Practices with high health check participation also showed a relative fall in preventable emergency admissions for their patients with ID, compared with practices with minimal participation (IRR 0.73, 95% CI 0.57 to 0.95). There were large variations in the health check-related content that was recorded on electronic records. Limitations Patients with milder ID not known to health services were not identified. We could not comment on the quality of health checks. Conclusions Compared with the general population, adults with ID have more chronic diseases and greater primary and secondary care utilisation. With more than one-third of deaths potentially amenable to health-care interventions, improvements in access to, and quality of, health care are required. In primary care, better continuity of care and longer appointment times are important examples that we identified. Although annual health checks can also improve access, not every eligible adult with ID receives one, and health check content varies by practice. Health checks had no impact on overall emergency admissions, but they appeared influential in reducing preventable emergency admissions. Future work No formal cost-effectiveness analysis of annual health checks was performed, but this could be attempted in relation to our estimates of a reduction in preventable emergency admissions. Funding The National Institute for Health Research Health Services and Delivery Research programme.

show abstract

Section: Mortalitymentioning

confidence: 51%

Section: Mortalitymentioning

confidence: 51%

Section: Mortalitymentioning

confidence: 99%

See 1 more Smart Citation

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

Carey

Hosking

Harris

et al. 2017

Health Serv Deliv Res

View full text Add to dashboard Cite

show abstract

“…There is a growing body of evidence that people with intellectual disability (ID) are at risk of health care disparities, unmet medical needs, and reduced life expectancy compared to the general population (Anderson et al, 2013; Krahn and Fox, 2014; Fenton et al, 2003; Hayden et al, 2005; Kancherla et al, 2013; Morgan et al, 2012; Salvador-Carulla and Symonds, 2016; Heslop and Glover, 2015; Lauer and McCallion, 2015). Recent reports by the United States Public Health Service and the Institute of Medicine identify a number of potential explanations for health disparities for individuals with ID, such as poor access to primary care, failure to include people with ID in public health programs and prevention activities, and insufficient education of health care providers (Krahn and Fox, 2014; Hayden et al, 2005; U.S.…”

Section: Introductionmentioning

confidence: 99%

A longitudinal assessment of adherence to breast and cervical cancer screening recommendations among women with and without intellectual disability

McDermott

Mann

et al. 2017

Preventive Medicine

View full text Add to dashboard Cite

Each year in the United States, about 4000 deaths are attributed to cervical cancer, and over 40,000 deaths are attributed to breast cancer (U.S. Cancer Statistics Working Group, 2015). The purpose of this study was to identify predictors of full, partial, and no screening for breast and cervical cancer among women with and without intellectual disability (ID) who are within the age group for screening recommended by the U.S. Preventive Service Task Force (USPSTF), while accounting for changes in recommendations over the study period. Women with ID and an age matched comparison group of women without ID were identified using merged South Carolina Medicaid and Medicare files from 2000 to 2010. The sample consisted of 9406 and 16,806 women for mammography screening and Papanicolaou (Pap) testing adherence, respectively. We estimated multinomial logistic regression models and determined that women with ID were significantly less likely than women without ID to be fully adherent compared to no screening with mammography recommendations (adjusted odds ratio [AOR]: 0.63, 95% confidence interval [CI] 0.55–0.72), and Pap testing recommendations (AOR: 0.17, 95% CI 0.16–0.19). For the 70% of women with ID for whom we had residential information, those who lived in a group home, medical facility, or supervised community living setting were more likely to be fully adherent with both preventive services than those living alone or with family members. For both outcomes, women residing in a supervised nonmedical community living setting had the highest odds of full adherence, adjusting for other covariates.

show abstract

“…2 Children with ID have an increased risk of early death compared to the general population. 3 In California, for example, children with severe or profound ID have a mortality rate of 3.8 per 1000 deaths, compared to 0.31 per 1000 among all children. 4,5 Survival is further reduced when children with ID suffer from significant motor dysfunction (e.g., epilepsy), progressive congenital conditions (e.g., Down Syndrome), and comorbidities.…”

mentioning

confidence: 99%

Children With Intellectual Disability and Hospice Utilization

Lindley

Colman

Meadows

2017

J Hosp Palliat Nurs

View full text Add to dashboard Cite

Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.

show abstract

Mortality of People with Intellectual and Developmental Disabilities from SelectUSState Disability Service Systems and Medical Claims Data

Cited by 120 publications

References 24 publications

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

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

A longitudinal assessment of adherence to breast and cervical cancer screening recommendations among women with and without intellectual disability

Children With Intellectual Disability and Hospice Utilization

Contact Info

Product

Resources

About