Item
Demographic Characteristics, Health Conditions, and Residential Service Use in Adults with Down Syndrome in 25 U.S. States
Metadados
Título
Demographic Characteristics, Health Conditions, and Residential Service Use in Adults with Down Syndrome in 25 U.S. States
Descrição
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Autor
Roger J. Stancliffe, K. Charlie Lakin, Sheryl A. Larson, Joshua Engler, Sarah Taub, Jon Fortune, and Julie Bershadsky
Língua
Ano que foi publicado
2012
País de Origem
Tipo de pesquisa
Metodologia
This study describes service users with Down syndrome (N 5 1,199) and a comparative sample with intellectual and developmental disabilities but not Down syndrome (N 5 11,182), drawn from National Core Indicator surveys of adult service users in 25 U.S. states.
Amostra
The total NCI sample consisted of 13,169 individ ual users of adult IDD services from 25 states, but 788 were missing data on Down syndrome diagno sis, leaving 12,381, of whom 1,199, or 9.7% (99% CIs [9.0, 10.4]) were reported to have Down syndrome. The overall sample of 12,381 was made up of 6,855 (55.5%) men and 5,491 (44.5%) women (gender missing for 35 participants), with an average age of 42.7 years (range 5 18–100). More detailed information about age, gender, race, level of ID, health, and service use is presented in the Results section.
Método de Pesquisa
Data were collected using the NCI Consumer Survey 2006–2007 version (two states) and 2007 2008 version (24 states). The survey is used to gather data about participating individual service users and the services they receive. We drew only on data from the NCI Background section, which was identical in both NCI versions. The NCI Background section requests data on the service user’s personal characteristics, functioning, diagno ses, health, problem behavior, living arrangements, and services. These data are obtained from individual records, setting administrators or case managers, and direct support providers.
Principais Descobertas
Individuals with Down syndrome were younger than were individuals without Down syndrome. Men with Down syndrome were older than women with Down syndrome, whereas the reverse was true of the individuals without Down syndrome. Most (68%) people with Down syndrome had mild or moderate intellectual disability. The prevalence of vision impairment, hearing impairment, and physical disability increased with age. Adults with Down syndrome were more likely to have Alzheimer’s dementia, have a hearing impairment, or be overweight, but they were less likely to have a physical disability than those without Down syndrome. Adults with Down syndrome were less likely to live in institutions or their own home, but they more likely to live in a family member’s home. The results of a logistic regression showed that participants were more likely to be reported to be overweight if they had Down syndrome, were female, and were physically inactive, but they were less likely to be reported to be overweight if they were older, had more severe intellectual disability, had cerebral palsy, or were not independently mobile.
Comentário Avaliativo
Strengths of our study include the large sample size, which allowed for more detailed analyses of associations with Down syndrome status, age, other personal characteristics, and different living arrangements.
One limitation of our study is that we relied on reported data rather than directly assessing each sample member. These reports came from well informed sources with access to agency records and the individuals’ files and included family members, case managers, and administrators. However, some data items were based on informant judgment (e.g., overweight) or records of existing diagnoses (e.g., Alzheimer’s) that may not be as accurate as direct, objective current assessment.