General health status in young people with intellectual disabilities with and without Down syndrome in, and transitioning from, special education: findings from the National Longitudinal Transitions Study-2.

BACKGROUND: There has been little prior investigation of the general health of young people with intellectual disabilities across transition, nor separately for youth with intellectual disabilities with or without Down syndrome, despite general health being a strong predictor of subsequent health service use, hospital admissions and mortality in the general population. We aimed to investigate general health status in youth with intellectual disabilities with and without Down syndrome over the transitional period and quantify the extent to which personal characteristics, parental relationship and household income are associated with general health status. METHODS: The National Longitudinal Transitions Study-2 includes a nationally representative sample of youth receiving special education services aged 13-17 years at wave 1, followed up over 10 years in five waves of data collection. Data on general health status of youth with intellectual disabilities with and without Down syndrome were obtained from parent reports. We summarised overall demographics and general health status and plotted general health status for those who had health data available for all five waves. We then used random-effects ordered logistic regression to investigate whether wave of data collection, age, sex, Down syndrome, ethnicity, parental relationship status and household income are associated with general health status. RESULTS: At wave 1, data on intellectual disabilities were available on 9008/9576 (94.1%) young people, and 871/9008 (9.7%) of them had intellectual disabilities, of whom 125/871 (14.4%) had Down syndrome. Youth with intellectual disabilities with or without Down syndrome had low rates of excellent or very good health. Across waves 1-5, there was a shallow gradient in the proportion of youth with intellectual disabilities reporting excellent/very good health, from 57.7% at 13-17 years to 52.6% at 21-25 years, being more marked for those without Down syndrome (57.8% at 13-17 years to 51.8% at 21-25 years). However, contrary to our expectations, an ordinal measure of general health status did not decline over this transitional period and did not differ between youth with and without Down syndrome. There was a gradient with higher income associated with better health, significantly so over $50 001 (odds ratio = 0.559, 95% confidence interval 0.366-0.854). Poorer health was experienced by youth with Hispanic, Latino or Spanish ethnicity (odds ratio = 1.790, 95% confidence interval 1.051-3.048). Female sex and parental relationship status were not associated with health status. CONCLUSIONS: Young people with intellectual disabilities have bad health, and require support across all ages, including transition. Schools, teachers and staff in transitional services should consider health, and health care and support during transitional planning due to change in service provision and be aware of ethnicity and the stressful effects of low household income. This is important as interventions based on provision of greater support can prevent adverse consequences.

Physical and mental health of young people with and without intellectual disabilities: cross-sectional analysis of a whole country population.

BACKGROUND: Transition to adulthood may be a period of vulnerability for health for individuals with intellectual disabilities. No large-scale studies have compared the health of individuals with and without intellectual disabilities undergoing transition. The aims of this study were (1) to compare health during transition for individuals with and without intellectual disabilities across a whole country population and (2) to establish whether transition is associated with health in the population with intellectual disabilities. METHODS: Data were drawn from Scotland's Census, 2011. Frequency data were calculated for young people with and without intellectual disabilities. Logistic regressions were used to determine the extent to which intellectual disabilities account for seven health outcomes (general health, mental health, physical disabilities, hearing impairment, visual impairment, long-term illness and day-to-day activity limitations), adjusted for age and gender. Within the intellectual disabilities population, logistic regressions were then used to determine whether age group (13-18 or 19-24 years) is associated with the seven health outcomes, adjusted by gender. RESULTS: A total of 5556/815 889 young people aged 13-24 years had intellectual disabilities. Those with intellectual disabilities were 9.6-125.0 times more likely to have poor health on the seven outcomes. Within the population with intellectual disabilities, the 19- to 24-year-olds with intellectual disabilities were more likely to have mental health problems than the 13- to 18-year-olds, but did not have poorer health on the other outcomes. The difference between age groups for mental health problems was greater for young people who did not have intellectual disabilities, but their overall level of mental health problems was substantially lower than for the young people with intellectual disabilities. CONCLUSIONS: This largest-to-date study quantifies the extent of the substantial health disparities experienced by young people with intellectual disabilities compared with people without intellectual disabilities. The young population with intellectual disabilities have substantial health problems; therefore, transition between child and adult services must be carefully planned in order to ensure that existing health conditions are managed and emerging problems minimised.