Autism spectrum disorders in the Stockholm Youth Cohort : design, prevalence and validity
(2012) In PLoS ONE 7(7). p.41280-41280- Abstract
OBJECTIVE: Reports of rising prevalence of autism spectrum disorders (ASD), along with their profound personal and societal burden, emphasize the need of methodologically sound studies to explore their causes and consequences. We here present the design of a large intergenerational resource for ASD research, along with population-based prevalence estimates of ASD and their diagnostic validity.
METHOD: The Stockholm Youth Cohort is a record-linkage study comprising all individuals aged 0-17 years, ever resident in Stockholm County in 2001-2007 (N = 589,114). ASD cases (N = 5,100) were identified using a multisource approach, involving registers covering all pathways to ASD diagnosis and care, and categorized according to co-morbid... (More)
OBJECTIVE: Reports of rising prevalence of autism spectrum disorders (ASD), along with their profound personal and societal burden, emphasize the need of methodologically sound studies to explore their causes and consequences. We here present the design of a large intergenerational resource for ASD research, along with population-based prevalence estimates of ASD and their diagnostic validity.
METHOD: The Stockholm Youth Cohort is a record-linkage study comprising all individuals aged 0-17 years, ever resident in Stockholm County in 2001-2007 (N = 589,114). ASD cases (N = 5,100) were identified using a multisource approach, involving registers covering all pathways to ASD diagnosis and care, and categorized according to co-morbid intellectual disability. Prospectively recorded information on potential determinants and consequences of ASD were retrieved from national and regional health and administrative registers. Case ascertainment was validated through case-note review, and cross validation with co-existing cases in a national twin study.
RESULTS: The 2007 year prevalence of ASD in all children and young people was 11.5 per 1,000 (95% confidence interval 11.2-11.8), with a co-morbid intellectual disability recorded in 42.6% (41.0-44.2) of cases. We found 96.0% (92.0-98.4) of reviewed case-notes being consistent with a diagnosis of ASD, and confirmed ASD in 85.2% (66.2-95.8) of affected twins.
CONCLUSIONS: Findings from this contemporary study accords with recently reported prevalence estimates from Western countries at around 1%, based on valid case ascertainment. The Stockholm Youth Cohort, in light of the availability of extensive information from Sweden's registers, constitutes an important resource for ASD research. On-going work, including collection of biological samples, will enrich the study further.
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- author
- Idring, Selma ; Rai, Dheeraj ; Dal, Henrik ; Dalman, Christina ; Sturm, Harald ; Zander, Eric LU ; Lee, Brian K ; Serlachius, Eva and Magnusson, Cecilia
- publishing date
- 2012
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Adolescent, Child, Child Development Disorders, Pervasive/epidemiology, Child, Preschool, Cohort Studies, Female, Humans, Intellectual Disability/epidemiology, Male, Prevalence, Reproducibility of Results, Sweden, Young Adult
- in
- PLoS ONE
- volume
- 7
- issue
- 7
- pages
- 41280 - 41280
- publisher
- Public Library of Science (PLoS)
- external identifiers
-
- scopus:84864085416
- pmid:22911770
- ISSN
- 1932-6203
- DOI
- 10.1371/journal.pone.0041280
- language
- English
- LU publication?
- no
- id
- 4ab9b980-540d-44ca-be12-fe387b733447
- date added to LUP
- 2019-05-29 22:20:34
- date last changed
- 2024-04-02 07:47:40
@article{4ab9b980-540d-44ca-be12-fe387b733447,
abstract = {{<p>OBJECTIVE: Reports of rising prevalence of autism spectrum disorders (ASD), along with their profound personal and societal burden, emphasize the need of methodologically sound studies to explore their causes and consequences. We here present the design of a large intergenerational resource for ASD research, along with population-based prevalence estimates of ASD and their diagnostic validity.</p><p>METHOD: The Stockholm Youth Cohort is a record-linkage study comprising all individuals aged 0-17 years, ever resident in Stockholm County in 2001-2007 (N = 589,114). ASD cases (N = 5,100) were identified using a multisource approach, involving registers covering all pathways to ASD diagnosis and care, and categorized according to co-morbid intellectual disability. Prospectively recorded information on potential determinants and consequences of ASD were retrieved from national and regional health and administrative registers. Case ascertainment was validated through case-note review, and cross validation with co-existing cases in a national twin study.</p><p>RESULTS: The 2007 year prevalence of ASD in all children and young people was 11.5 per 1,000 (95% confidence interval 11.2-11.8), with a co-morbid intellectual disability recorded in 42.6% (41.0-44.2) of cases. We found 96.0% (92.0-98.4) of reviewed case-notes being consistent with a diagnosis of ASD, and confirmed ASD in 85.2% (66.2-95.8) of affected twins.</p><p>CONCLUSIONS: Findings from this contemporary study accords with recently reported prevalence estimates from Western countries at around 1%, based on valid case ascertainment. The Stockholm Youth Cohort, in light of the availability of extensive information from Sweden's registers, constitutes an important resource for ASD research. On-going work, including collection of biological samples, will enrich the study further.</p>}},
author = {{Idring, Selma and Rai, Dheeraj and Dal, Henrik and Dalman, Christina and Sturm, Harald and Zander, Eric and Lee, Brian K and Serlachius, Eva and Magnusson, Cecilia}},
issn = {{1932-6203}},
keywords = {{Adolescent; Child; Child Development Disorders, Pervasive/epidemiology; Child, Preschool; Cohort Studies; Female; Humans; Intellectual Disability/epidemiology; Male; Prevalence; Reproducibility of Results; Sweden; Young Adult}},
language = {{eng}},
number = {{7}},
pages = {{41280--41280}},
publisher = {{Public Library of Science (PLoS)}},
series = {{PLoS ONE}},
title = {{Autism spectrum disorders in the Stockholm Youth Cohort : design, prevalence and validity}},
url = {{http://dx.doi.org/10.1371/journal.pone.0041280}},
doi = {{10.1371/journal.pone.0041280}},
volume = {{7}},
year = {{2012}},
}