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Authors Hagberg KW, Jick SS
Received 7 April 2017
Accepted for publication 29 June 2017
Published 15 September 2017 Volume 2017:9 Pages 475—482
DOI https://doi.org/10.2147/CLEP.S139107
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Dr Colin Mak
Peer reviewer comments 3
Editor who approved publication: Professor Vera Ehrenstein
Background: Prior studies have reported that the validity of autism spectrum
disorder (ASD) diagnoses recorded in the Clinical Practice Research Datalink
(CPRD) was high; however, diagnostic criteria and screening practices have
changed since the last study was published in 2004.
Objectives: 1) To calculate the positive predictive value
(PPV) of ASD diagnoses recorded in the CPRD compared to original medical
records and 2) to describe characteristics of cases and use of clinical codes
that support the ASD diagnosis as recorded in the electronic data by general
practitioners over time.
Methods: We identified children with a code for ASD (autism
spectrum disorder, autism, Asperger’s, or pervasive developmental disorder) in
the CPRD from 1990 to 2014. We evaluated presence of codes in the electronic
medical record indicating the presence of developmental delay, speech delay,
behavioral problems, and other supporting clinical codes (e.g., therapy,
referrals, etc.). We also evaluated changes in recording of these clinical
codes over time. We compared the information present in the electronic medical
record to original medical records for a sample of cases and calculated PPVs of
ASD diagnoses recorded in the CPRD.
Results: We identified 2154 children with a code for ASD.
The mean age at diagnosis was 5.8 years, and 84% of cases were male. The
majority (78.4%) had 1 ASD diagnosis code in their electronic medical record.
Approximately half of the cases had a code indicating behavioral problem,
developmental delay, or speech delay, and 24.7% had a code indicating
specialist referral or visit. After review of original medical records, the PPV
of ASD diagnoses recorded in the CPRD was 91.9%.
Conclusion: The results of this study suggest that ASD
diagnoses recorded in the CPRD are reliable and can be used with confidence to
study ASD.
Keywords: autism spectrum
disorder, ASD, CPRD, validation