Emily Lauer

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

BACKGROUND Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the populations health and insights into underlying health concerns and the need for and effectiveness of public health efforts. METHODS Data from both US state intellectual and developmental disabilities service system administrative data sets and de-identified state Medicaid claims were used to calculate average age at death and crude mortality rates. RESULTS Average age at death for people in state intellectual and developmental disabilities systems was 50.4-58.7 years and 61.2-63.0 years in Medicaid data, with a crude adult mortality rate of 15.2 per thousand. CONCLUSIONS Age at death remains lower and mortality rates higher for people with intellectual and developmental disabilities. Improved case finding (e.g. medical claims) could provide more complete mortality patterns for the population with intellectual and developmental disabilities to inform the range of access and receipt of supportive and health-related interventions and preventive care.

Determinants of mammography in women with intellectual disabilities

Background: Women with intellectual disabilities have the same rate of breast cancer as other women but are less likely to undergo screening mammography. Characteristics associated with mammography for women with intellectual disabilities in the United States are unknown. Methods: This study was based on a secondary data analysis of the Massachusetts Department of Developmental Services database, comparing women who had a mammogram within 2 years with women who had not on variables related to the ecological model. Bivariate analyses, logistic regression, and assessment of interactions were performed. Results: The study samples (n = 2907) mean age was 54.7 years; 58% lived in 24-hour residential settings, 52% received nursing health coordination, and more than 25% had clinical examination needs (eg, sedation). Residential setting, health coordination, and recent influenza vaccination were all associated with mammography. Having a guardian, higher level of activities of daily living needs, and examination needs (requiring sedation or limited wait time for examinations) were associated with lower rates. Interactions between health coordination and examination needs confirmed the potential of the nurse to ameliorate barriers to mammography. Conclusion: Several system-level variables were significantly associated with mammography and, in some cases, seemed to ameliorate intrapersonal/behavioral barriers to mammography. Community agencies caring for intellectually disabled women have potential to impact mammography rates by using health coordination.

Characteristics associated with bone mineral density screening in adults with intellectual disabilities.

Background: Certain health characteristics place adults with intellectual disability at increased risk for osteoporosis. However, little data exist to describe how comorbid disease or medications affect screening patterns for these patients. Methods: We evaluated the relationship between bone density screening and the presence of risk factors using a secondary cross-sectional analysis of 5520 adults aged 19 years and older with the diagnosis of intellectual disability. Results: Of the sample, 22.9% received one or more bone density screenings (34.4% women, 13.3% men). Low screening rates in men prohibited the construction of a valid sex-specific multivariate model of the association between bone density screening and risk factors for osteoporosis. In women, when controlling for age the following factors were significantly associated with ever having bone density screening: use of antiepileptic medication (odds ratio [OR], 1.5) and vitamin D (OR, 3.4); recent receipt of a flu vaccine (OR, 1.4); and living in a 24-hour supported residential setting (OR, 1.3). A diagnosis of Down syndrome (OR, 0.72) was associated with decreased likelihood of screening. Conclusions: Many known risk factors for osteoporosis affected the likelihood of an adult with intellectual disability receiving screening, yet overall screening rates for adults with intellectual disabilities were lower than screening rates in the general population. Results suggest a need for increased provider awareness about bone density screenings in high-risk adults with intellectual disability, especially men, as well as men and women with Down syndrome.

Mortality in People with Intellectual Disabilities

This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

Analysis of Maternal Risk Factors Associated With Congenital Vertebral Malformations

Study Design. A retrospective medical record review of cases with congenital vertebral malformations (CVMs) and controls with normal spine morphology. Objective. To determine the relative contribution of maternal environmental factors (MEFs) during pregnancy to CVM development. Summary of Background Data. CVMs represent defects in formation and segmentation of somites occurring with an estimated incidence of between 0.13 and 0.50 per 1000 live births. CVMs may be associated with various phenotypes and represent significant morbidity due to pain and cosmetic disfigurement. Methods. A multicenter retrospective medical record review of 229 cases with CVM and 267 controls with normal spine morphology between the ages of 1 and 50 years was performed to obtain the odds ratio (OR) of MEF related to CVM among cases versus controls. An imputation-based analysis was performed in which subjects with no documentation of MEF history were treated as “no maternal exposure.” Univariate and multivariate analyses were conducted to calculate the OR. Results. Of the 229 total cases, 104 cases had single or multiple CVMs without additional congenital malformations (group 1) and 125 cases had single or multiple CVMs and additional congenital malformations (group 2). Nineteen percent of total cases had an identified MEF. The OR for MEF history for group 1 was 6.0 (95% confidence interval, 2.4–15.1; P < 0.001) in the univariate analysis. The OR for MEF history in group 2 was 9.1 (95% confidence interval, 3.8–21.6, P < 0.001) in the univariate analysis. The results were confirmed in the multivariate analysis after adjusting for age, sex, and institution. Conclusions. These results support a hypothesis for an association between these MEFs during pregnancy and CVM and have implications for development of prevention strategies. Further prospective studies are needed to quantify association between CVMs and specific MEF. Level of Evidence: 4

Using Medicaid Data to Characterize Persons With Intellectual and Developmental Disabilities in Five U.S. States

This project sought to identify Medicaid members with intellectual and developmental disabilities (IDD) in five states (Delaware, Iowa, Massachusetts, New York, and South Carolina) to develop a cohort for subsequent analyses of medical conditions and service utilization. We estimated that over 300,000 Medicaid members in these states had IDD. All members with diagnostic codes for IDD were identified and the three most frequent diagnoses were unspecified intellectual disability, autism or pervasive developmental disorder, and cerebral palsy. The percentage of Medicaid members with IDD ranged from 2.3% in New York to 4.2% in South Carolina. Identifying and characterizing people with IDD is a first step that could guide public health promotion efforts for this population.