Abstract
OBJECTIVES: To evaluate the sensitivity and positive predictive value (PPV) of administrative health and education data for identifying cases of autism spectrum disorder (ASD) in Manitoba, and to recommend a surveillance case definition.
METHODS: Four service providers abstracted information on children who had been clinically diagnosed with ASD (“sensitivity cohort”). That information was linked to Manitoba’s administrative health and education data and records were extracted into the study dataset. Records were also included for children who had an administrative diagnosis of ASD but who were not part of the sensitivity cohort. Study packages were mailed to the parents of the latter group in order to verify their diagnostic status. The sensitivity and PPV of various case definitions were calculated.
RESULTS: Among the 1728 service provider-reported cases, 1532 had an administrative diagnosis of ASD. A total of 2414 children had an administrative diagnosis, of whom 882 were not part of the sensitivity cohort. The response to the mail-out was very poor (<3%). Accordingly, we calculated minimum PPVs. Our recommended surveillance case definitions are ≥1 physician claim (ICD-9-CM 299) or ≥1 “ASD” special education record (2–5 years of age), and ≥2 physician claims or ≥1 “ASD” special education record (6–14 years of age). The sensitivity ranged from 80% (95% CI: 77–83) to 88% (95% CI: 83–91) and the minimum PPV from 70% (95% CI: 67–73) to 78% (95% CI: 75–81) for these definitions.
CONCLUSION: This work advances the goal of establishing a cost-effective national surveillance system for ASD.
Résumé
OBJECTIFS: Évaluer la sensibilité et la valeur prédictive positive (VPP) des données administratives dans le domaine de la santé et de l’éducation pour déceler les cas de troubles du spectre autistique (TSA) au Manitoba et recommander une définition de cas sous surveillance.
MÉTHODE: Quatre dispensateurs de services ont résumé les renseignements d’enfants ayant reçu un diagnostic clinique de TSA («cohorte de sensibilité»). Ces renseignements ont été maillés avec les données administratives du Manitoba dans le domaine de la santé et de l’éducation, et les dossiers ont été extraits vers le jeu de données de l’étude. Ont aussi été inclus les dossiers des enfants ayant un diagnostic administratif de TSA, mais ne faisant pas partie de la cohorte de sensibilité. La trousse de l’information de l’étude a été envoyée par la poste aux parents de ce dernier groupe pour confirmer le diagnostic des enfants. La sensibilité et la VPP de diverses définitions de cas ont été calculées.
RÉSULTATS: Sur les 1 728 cas déclarés par les dispensateurs de services, 1 532 avaient un diagnostic administratif de TSA. Au total, 2 414 enfants avaient un diagnostic administratif, dont 882 ne faisant pas partie de la cohorte de sensibilité. La réponse à l’envoi postal a été nettement insuffisante (<3 %). Par conséquent, nous avons calculé des VPP minimales. Nos définitions de cas sous surveillance recommandées sont ≥1 demande(s) de paiement de médecin(s) (CIM-9-MC 299) ou ≥1 dossier(s) d’éducation spécialisée «TSA» (2–5 ans), et ≥2 demandes de paiement de médecins ou ≥1 dossier(s) d’éducation spécialisée «TSA» (6–14 ans). La sensibilité variait de 80 % (IC de 95 %: 77–83) à 88 % (IC de 95 %: 83–91 ) et la VPP minimale de 70 % (IC de 95 %: 67–73) à 78 % (IC de 95 %: 75–81) pour ces définitions.
CONCLUSION: Ce travail nous rapproche de l’objectif d’établir un système de surveillance national économiquement efficace pour les TSA.
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References
Government of Canada. Surveillance of Autism Spectrum Disorder (ASD). Ottawa, ON: Government of Canada, 2016. Available at: http://healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/autism-autisme/surveillance-eng.php?id=surveillance (Accessed June 21, 2016).
Dodds L, Spencer A, Shea S, Fell D, Armson BA, Allen AC, et al. Validity of autism diagnoses using administrative health data. Chronic Dis Can 2009; 29:102–7. PMID: 19527568.
Manitoba Centre for Health Policy. Population Health Research Data Repository Data List. Winnipeg, MB: Manitoba Centre for Health Policy, n.d. Available at: http://umanitoba.ca/faculties/health_sciences/medicine/units/community_health_sciences/departmental_units/mchp/resources/repository/datalist.html (Accessed June 21, 2016).
Roos LL, Brownell M, Lix L, Roos NP, Walld R, MacWilliam L. From health research to social research: Privacy, methods, approaches. Soc Sci Med 2008; 66:117–29. PMID: 17919795. doi: 10.1016/j.socscimed.2007.08.017.
Manitoba Centre for Health Policy. Concept: Intellectual Disability (Mental Retardation)/Developmental Disability. Winnipeg, MB: Manitoba Centre for Health Policy, 2015. Available at: http://mchp-appserv.cpe.umanitoba.ca/viewConcept.php?conceptID=1365 (Accessed June 30, 2016).
Burke JP, Jain A, Yang W, Kelly JP, Kaiser M, Becker L, et al. Does a claims diagnosis of autism mean a true case? Autism 2014;18:321–30. PMID: 23739541. doi: 10.1177/1362361312467709.
Lix LM, Walker R, Quan H, Nesdole R, Yang J, Chen G, et al. Features of physician services databases in Canada. Chronic Dis Inj Can 2012;32:186–93. PMID: 23046800.
Polyak A, Kubina RM, Girirajan S. Comorbidity of intellectual disability confounds ascertainment of autism: Implications for genetic diagnosis. Am J Med Genet B Neuropsychiatr Genet 2015;168:600–8. PMID: 26198689. doi: 10. 1002/ajmg.b.32338.
Ouellette-Kuntz HM, Coo H, Lam M, Yu CT, Breitenbach MM, Hennessey PE, et al. Age at diagnosis of autism spectrum disorders in four regions of Canada. Can J Public Health 2009;100:268–73. PMID: 19722339.
Lix L, Yogendran M, Mann J. Defining and Validating Chronic Diseases: An Administrative Data Approach. An Update with ICD-10-CA. Winnipeg, MB: Manitoba Centre for Health Policy, 2008.
Fombonne E. Epidemiology of pervasive developmental disorders. Pediatr Res 2009;65:591–98. PMID: 19218885. doi: 10.1203/PDR.0b013e31819e7203.
Nattinger AB, Laud PW, Bajorunaite R, Sparapani RA, Freeman JL. An algorithm for the use of Medicare claims data to identify women with incident breast cancer. Health Serv Res 2003;39:1733–49. PMID: 15533184. doi: 10.1111/j.1475-6773.2004.00315.X.
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Acknowledgements: This work was funded by the Public Health Agency of Canada (PHAC). The authors acknowledge the Manitoba Centre for Health Policy (MCHP) for use of data contained in the Population Health Research Data Repository (Health Information Privacy Committee (HIPC) No. 2013/2014-26, 2014/2015-05, and 2014/2015-63). We thank Yao Nie, a data analyst at the MCHP, for her contribution to this project. The results and conclusions are those of the authors and no official endorsement by PHAC, MCHP, Manitoba Health, Seniors and Active Living (MHSAL), or other data providers is intended or should be inferred. Data used in this study are from the Population Health Research Data Repository housed at MCHP, University of Manitoba and were derived from data provided by MHSAL, the Manitoba Adolescent Treatment Centre, and Manitoba Education and Training.
Conflict of Interest: None to declare.
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Coo, H., Ouellette-Kuntz, H., Brownell, M. et al. Validating an administrative data-based case definition for identifying children and youth with autism spectrum disorder for surveillance purposes. Can J Public Health 108, e530–e538 (2017). https://doi.org/10.17269/CJPH.108.5963
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DOI: https://doi.org/10.17269/CJPH.108.5963
Key words
- Autism spectrum disorder
- surveillance
- administrative data
- validation studies
- Manitoba
- Manitoba Centre for Health Policy