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.
Down syndrome
health
intellectual disabilities
longitudinal cohort
transition
young people
Journal
Journal of intellectual disability research : JIDR
ISSN: 1365-2788
Titre abrégé: J Intellect Disabil Res
Pays: England
ID NLM: 9206090
Informations de publication
Date de publication:
12 2020
12 2020
Historique:
received:
09
12
2019
revised:
08
09
2020
accepted:
08
09
2020
pubmed:
14
10
2020
medline:
14
10
2021
entrez:
13
10
2020
Statut:
ppublish
Résumé
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. 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. 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. 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.
Sections du résumé
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.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
895-907Informations de copyright
© 2020 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Références
Andersen S. L., Tomada A., Vincow E. S., Valente E., Polcari A. & Teicher M. H. (2008) Preliminary evidence for sensitive periods in the effect of childhood sexual abuse on regional brain development. Journal of Neuropsychiatry and Clinical Neuroscience 20, 292-301.
Arnett J. J. (2014) Emerging Adulthood: The Winding Road from the Late Teens Through the Twenties, 2nd edn. Oxford University Press, Oxford.
Burnstrom B. & Fredlund P. (2001) Self-rated health: is it as good a predictor of subsequent mortality among adults in lower as well as in higher social classes? Journal of Epidemiology and Community Health 55, 836-840.
Carmelli E., lmam B., Bachar A. & Merrick J. (2012) Inflammation and oxidative stress as biomarkers of premature aging in persons with intellectual disability. Research in Developmental Disabilities 33, 369-375.
Einfeid S. L., Ellis L. A. & Emerson E. (2011) Comorbidity of intellectual disability and mental disorder in children and adolescents: a systematic review. Journal of Intellectual and Developmental Disability 36, 137-143.
Emerson E. & Hatton C. (2007a) The mental health of children and adolescents with intellectual disabilities in Britain. British Journal of Psychiatry 191, 493-499.
Emerson E. & Hatton C. (2007b) Contribution of socio-economic position to the health status of children and adolescents with intellectual disabilities in Britain. American Journal of Mental Retardation 112, 140-150.
Emerson E. & Hatton C. (2007c) Poverty, socio-economic position, social capital and the health of children and adolescents with intellectual disabilities in Britain: a replication. Journal of Intellectual Disability Research 51, 866-874.
Evans G. W. (2003) A multimethodological analysis of cumulative risk and allostatic load among rural children. Developmental Psychology 39, 924-933.
Evans G. W., Kim P., Ting A. H., Tesher H. B. & Shannis D. (2007) Cumulative risk, maternal responsiveness, and allostatic load among young adolescents. Developmental Psychology 43, 341-351.
Evans G. W. & Schamberg M. A. (2009) Childhood poverty, chronic stress, and adult working memory. Proceedings of the National Academy of Sciences 106, 6545-6549.
Gustafsson P. E., Janlert U., Theorell T., Westerlund H. & Hammarström A. (2011) Socioeconomic status over the life course and allostatic load in adulthood: results from the Northern Swedish Cohort. Journal of Epidemiology and Community Health 65, 986-992.
Heistaro S., Jousilahti P., Lahelma E., Vartiainen E. & Puska P. (2001) Self-rated health and mortality: a long-term prospective study in Eastern Finland. Epidemiology and Community Health 55, 227-232.
Hudson B. (2006) Making and missing connections: leaving disability services and the transition from adolescence to adulthood. Disability and Society 21, 47-60.
Hughes-McCormack L. A., Rydzewska E., Henderson A., MacIntyre C., Rintoul J. & Cooper S. (2017) Prevalence of mental health conditions and relationship with general health in a whole-country population of people with intellectual disabilities compared with the general population. British Journal of Psychiatry Open 3, 243-248.
Hughes-McCormack L. A., Rydzewska E., Henderson A., MacIntyre C., Rintoul J. & Cooper S.-A. (2018) Prevalence and general health status of people with intellectual disabilities in Scotland - a total population study. Journal of Epidemiology and Community Health 72, 78-85.
Juster R. P., McEwen B. S. & Lupien S. J. (2009) Allostatic load biomarkers of chronic stress and impact on health and cognition. Neuroscience and Biobehavioral Reviews 35, 2-16.
Kinnear D., Morrison J., Allan L., Henderson A., Smiley E. & Cooper S.-A. (2018) Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study. BMJ Open, e018292.
Knudsen E. I. (2004) Sensitive periods in the development of the brain and behavior. Journal of Cognitive Neuroscience 16, 412-425.
Lipkin P. H., Okamoto J. & Council on Children with Disabilities & Council on School Health (2015) The Individuals with Disabilities Education Act (IDEA) for children with special educational needs. Pediatrics 136, e1650-e1662.
McEwen B. S. & Gianaros P. J. (2010) Central role of the brain in stress and adaptation: links to socioeconomic status, health, and disease. Annals of the New York Academy of Sciences 1186, 190-222.
Miilunpalo S., Vuori I., Oja P., Pasanen M. & Urponen H. (1997) Self-rated health status as a health measure: the predictive value of self-reported health status on the use of physician services and on mortality in the working-age population. Journal of Clinical Epidemiology 50, 517-528.
Oesburg B., Dijkstra G. J., Groothoff J. W., Reijneveld S. A. & Jansen D. E. (2011) Prevalence of chronic health conditions in children with intellectual disability: a systematic literature review. Intellectual and Developmental Disabilities 49, 59-85.
Perkins E. A. (2007) Self- and proxy reports across three populations: older adults, persons with Alzheimer's disease, and persons with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 4, 1-10.
Rice D. & Barone S., Jr. (2000) Critical periods of vulnerability for the developing nervous system: evidence from humans and animal models. Environmental Health Perspectives 108, 511-533.
Schnittker J. & Bacak V. (2014) The increasing predictive validity of self-rated health. PLoS ONE 9, e84933.
Seeman T. E., McEwen B. S., Rowe J. W. & Singer B. H. (2001) Allostatic load as a marker of cumulative biological risk: MacArthur studies of successful aging. Proceedings of the National Academy of Sciences of the United States of America NAS 98, 4770-4775.
Twisk J. W. (2013) Applied Longitudinal Data Analysis for Epidemiology: A Practical Guide. Cambridge University Press, Cambridge, UK.
Young-Southward G., Philo C. & Cooper S.-A. (2017b) What effect does transition have on health and well-being in young people with intellectual disabilities? A systematic review. Journal of Applied Research in Intellectual Disabilities 30, 805-823.
Young-Southward G., Rydzewska E., Philo C. & Cooper S.-A. (2017a) Physical and mental health of young people with and without intellectual disabilities: cross-sectional analysis of a whole country population. Journal of Intellectual Disability Research 61, 984-993.