Validation of the diagnosis of autism in general practitioner records

Eric Fombonne, Lisa Heavey, Liam Smeeth, Laura C. Rodrigues, Claire Cook, Peter G. Smith, Linyan Meng, Andrew J. Hall

Research output: Contribution to journalArticle

107 Citations (Scopus)

Abstract

Background: We report on the validity of the computerized diagnoses of autism in a large case-control study investigating the possible association between autism and the measles, mumps and rubella vaccine in the UK using the General Practitioner Research Database (GPRD). We examined anonymized copies of all relevant available clinical reports, including general practitioners' (GP) notes, consultant, speech therapy and educational psychologists reports, on 318 subjects born between 1973 and 1997 with a diagnosis of autism or a related disorder recorded in their electronic general practice record. Methods: Data were abstracted to a case validation form allowing for the identification of developmental symptoms relevant to the diagnosis of pervasive developmental disorders (PDDs). Information on other background clinical and familial features was also abstracted. A subset of 50 notes was coded independently by 2 raters to derive reliability estimates for key clinical characteristics. Results: For 294 subjects (92.5%) the diagnosis of PDD was confirmed after review of the records. Of these, 180 subjects (61.2%) fulfilled criteria for autistic disorder. The mean age at first recording of a PDD diagnosis in the GPRD database was 6.3 years (SD = 4.6). Consistent with previous estimates, the proportion of subjects experiencing regression in the course of their development was 19%. Inter-rater reliability for the presence of a PDD diagnosis was good (kappa = .73), and agreement on clinical features such as regression, age of parental recognition of first symptoms, language delay and presence of epilepsy was also good (kappas ranging from .56 to 1.0). Conclusions: This study provides evidence that the positive predictive value of a diagnosis of autism recorded in the GPRD is high.

Original languageEnglish (US)
Article number1
Pages (from-to)1-9
Number of pages9
JournalBMC Public Health
Volume4
DOIs
StatePublished - Mar 3 2004
Externally publishedYes

Fingerprint

Autistic Disorder
General Practitioners
Databases
Research
Measles-Mumps-Rubella Vaccine
Language Development Disorders
Speech Therapy
Consultants
General Practice
Case-Control Studies
Epilepsy
Parents
Psychology

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Fombonne, E., Heavey, L., Smeeth, L., Rodrigues, L. C., Cook, C., Smith, P. G., ... Hall, A. J. (2004). Validation of the diagnosis of autism in general practitioner records. BMC Public Health, 4, 1-9. [1]. https://doi.org/10.1186/1471-2458-4-1

Validation of the diagnosis of autism in general practitioner records. / Fombonne, Eric; Heavey, Lisa; Smeeth, Liam; Rodrigues, Laura C.; Cook, Claire; Smith, Peter G.; Meng, Linyan; Hall, Andrew J.

In: BMC Public Health, Vol. 4, 1, 03.03.2004, p. 1-9.

Research output: Contribution to journalArticle

Fombonne, E, Heavey, L, Smeeth, L, Rodrigues, LC, Cook, C, Smith, PG, Meng, L & Hall, AJ 2004, 'Validation of the diagnosis of autism in general practitioner records', BMC Public Health, vol. 4, 1, pp. 1-9. https://doi.org/10.1186/1471-2458-4-1
Fombonne, Eric ; Heavey, Lisa ; Smeeth, Liam ; Rodrigues, Laura C. ; Cook, Claire ; Smith, Peter G. ; Meng, Linyan ; Hall, Andrew J. / Validation of the diagnosis of autism in general practitioner records. In: BMC Public Health. 2004 ; Vol. 4. pp. 1-9.
@article{567ba74e1e814d39ac6e3de8e90eb91f,
title = "Validation of the diagnosis of autism in general practitioner records",
abstract = "Background: We report on the validity of the computerized diagnoses of autism in a large case-control study investigating the possible association between autism and the measles, mumps and rubella vaccine in the UK using the General Practitioner Research Database (GPRD). We examined anonymized copies of all relevant available clinical reports, including general practitioners' (GP) notes, consultant, speech therapy and educational psychologists reports, on 318 subjects born between 1973 and 1997 with a diagnosis of autism or a related disorder recorded in their electronic general practice record. Methods: Data were abstracted to a case validation form allowing for the identification of developmental symptoms relevant to the diagnosis of pervasive developmental disorders (PDDs). Information on other background clinical and familial features was also abstracted. A subset of 50 notes was coded independently by 2 raters to derive reliability estimates for key clinical characteristics. Results: For 294 subjects (92.5{\%}) the diagnosis of PDD was confirmed after review of the records. Of these, 180 subjects (61.2{\%}) fulfilled criteria for autistic disorder. The mean age at first recording of a PDD diagnosis in the GPRD database was 6.3 years (SD = 4.6). Consistent with previous estimates, the proportion of subjects experiencing regression in the course of their development was 19{\%}. Inter-rater reliability for the presence of a PDD diagnosis was good (kappa = .73), and agreement on clinical features such as regression, age of parental recognition of first symptoms, language delay and presence of epilepsy was also good (kappas ranging from .56 to 1.0). Conclusions: This study provides evidence that the positive predictive value of a diagnosis of autism recorded in the GPRD is high.",
author = "Eric Fombonne and Lisa Heavey and Liam Smeeth and Rodrigues, {Laura C.} and Claire Cook and Smith, {Peter G.} and Linyan Meng and Hall, {Andrew J.}",
year = "2004",
month = "3",
day = "3",
doi = "10.1186/1471-2458-4-1",
language = "English (US)",
volume = "4",
pages = "1--9",
journal = "BMC Public Health",
issn = "1471-2458",
publisher = "BioMed Central",

}

TY - JOUR

T1 - Validation of the diagnosis of autism in general practitioner records

AU - Fombonne, Eric

AU - Heavey, Lisa

AU - Smeeth, Liam

AU - Rodrigues, Laura C.

AU - Cook, Claire

AU - Smith, Peter G.

AU - Meng, Linyan

AU - Hall, Andrew J.

PY - 2004/3/3

Y1 - 2004/3/3

N2 - Background: We report on the validity of the computerized diagnoses of autism in a large case-control study investigating the possible association between autism and the measles, mumps and rubella vaccine in the UK using the General Practitioner Research Database (GPRD). We examined anonymized copies of all relevant available clinical reports, including general practitioners' (GP) notes, consultant, speech therapy and educational psychologists reports, on 318 subjects born between 1973 and 1997 with a diagnosis of autism or a related disorder recorded in their electronic general practice record. Methods: Data were abstracted to a case validation form allowing for the identification of developmental symptoms relevant to the diagnosis of pervasive developmental disorders (PDDs). Information on other background clinical and familial features was also abstracted. A subset of 50 notes was coded independently by 2 raters to derive reliability estimates for key clinical characteristics. Results: For 294 subjects (92.5%) the diagnosis of PDD was confirmed after review of the records. Of these, 180 subjects (61.2%) fulfilled criteria for autistic disorder. The mean age at first recording of a PDD diagnosis in the GPRD database was 6.3 years (SD = 4.6). Consistent with previous estimates, the proportion of subjects experiencing regression in the course of their development was 19%. Inter-rater reliability for the presence of a PDD diagnosis was good (kappa = .73), and agreement on clinical features such as regression, age of parental recognition of first symptoms, language delay and presence of epilepsy was also good (kappas ranging from .56 to 1.0). Conclusions: This study provides evidence that the positive predictive value of a diagnosis of autism recorded in the GPRD is high.

AB - Background: We report on the validity of the computerized diagnoses of autism in a large case-control study investigating the possible association between autism and the measles, mumps and rubella vaccine in the UK using the General Practitioner Research Database (GPRD). We examined anonymized copies of all relevant available clinical reports, including general practitioners' (GP) notes, consultant, speech therapy and educational psychologists reports, on 318 subjects born between 1973 and 1997 with a diagnosis of autism or a related disorder recorded in their electronic general practice record. Methods: Data were abstracted to a case validation form allowing for the identification of developmental symptoms relevant to the diagnosis of pervasive developmental disorders (PDDs). Information on other background clinical and familial features was also abstracted. A subset of 50 notes was coded independently by 2 raters to derive reliability estimates for key clinical characteristics. Results: For 294 subjects (92.5%) the diagnosis of PDD was confirmed after review of the records. Of these, 180 subjects (61.2%) fulfilled criteria for autistic disorder. The mean age at first recording of a PDD diagnosis in the GPRD database was 6.3 years (SD = 4.6). Consistent with previous estimates, the proportion of subjects experiencing regression in the course of their development was 19%. Inter-rater reliability for the presence of a PDD diagnosis was good (kappa = .73), and agreement on clinical features such as regression, age of parental recognition of first symptoms, language delay and presence of epilepsy was also good (kappas ranging from .56 to 1.0). Conclusions: This study provides evidence that the positive predictive value of a diagnosis of autism recorded in the GPRD is high.

UR - http://www.scopus.com/inward/record.url?scp=2642578473&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=2642578473&partnerID=8YFLogxK

U2 - 10.1186/1471-2458-4-1

DO - 10.1186/1471-2458-4-1

M3 - Article

C2 - 15113435

AN - SCOPUS:2642578473

VL - 4

SP - 1

EP - 9

JO - BMC Public Health

JF - BMC Public Health

SN - 1471-2458

M1 - 1

ER -