Validation of the diagnosis of autism in general practitioner records

FOMBONNE, E., HEAVEY, L., SMEETH, L., RODRIGUES, L. C., COOK, C., SMITH, P. G., MENG, L. and HALL, A. J. (2004). Validation of the diagnosis of autism in general practitioner records. BMC public health, 4.

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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.

Item Type: Article
Uncontrolled Keywords: autism, pervasive developmental disorders, epidemiology, case-control study, regression, computerized database, validity, validation, positive predictive value
Research Institute, Centre or Group - Does NOT include content added after October 2018: Psychology Research Group
Identification Number:
Depositing User: Ann Betterton
Date Deposited: 21 Nov 2008
Last Modified: 18 Mar 2021 21:45

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