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The Effect of Different Algorithms on Prevalence of Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorder in Secondary Healthcare Data in Five European Countries: A Contribution from the ConcePTION Project

Joanne Given Orcid Logo, Olga Paoletti Orcid Logo, Rebecca Bromley Orcid Logo, Elisa Ballardini, Anna-Belle Beau, Claudia Bartolini Orcid Logo, Anthony Caillet, Alex Coldea, Christine Damase-Michel Orcid Logo, Hywel Evans Orcid Logo, Sue Jordan, Maarit K. Leinonen Orcid Logo, Marco Manfrini Orcid Logo, Visa Martikainen, Joan K. Morris Orcid Logo, Amanda J. Neville, Hedvig Nordeng Orcid Logo, Aurora Puccini, Florence Coste Orcid Logo, Maria Loane Orcid Logo

Journal of Autism and Developmental Disorders

Swansea University Authors: Alex Coldea, Hywel Evans Orcid Logo, Sue Jordan

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Abstract

To assess the effect on prevalence estimates of using different algorithms to identify children with attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) in healthcare data. Three algorithms were developed and run on administrative/research data in Finland, France (Haut...

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Published in: Journal of Autism and Developmental Disorders
ISSN: 0162-3257 1573-3432
Published: Springer Science and Business Media LLC 2025
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa70232
Abstract: To assess the effect on prevalence estimates of using different algorithms to identify children with attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) in healthcare data. Three algorithms were developed and run on administrative/research data in Finland, France (Haute Garonne), Italy (Emilia Romagna), Norway and Wales: (1) ≥ 1 ADHD or ASD diagnoses recorded in specialist settings, (2) ≥ 2 ADHD or ASD diagnoses recorded in primary care and (3) ≥ 1 prescription for medication to manage ADHD. Prevalence rates per 1000 children for each algorithm were calculated. 3,130,162 children (born 1996–2020) with 29,291,204 years of follow-up were included. ADHD prevalence per 1000 children in specialist settings ranged from 3.9 (Emilia Romagna) to 24.1 (Finland); and was 7.0 in primary care (Finland). Based on prescriptions, ADHD prevalence ranged from 0.1 (Emilia Romagna) to 9.9 (Haute Garonne). ASD prevalence in specialist settings ranged from 5.6 (Wales) to 9.7 (Finland), and in primary care from 1.0 (Finland) to 2.0 (Wales). Prevalence of ADHD and ASD was greater among children with longer follow-up. In Finland and Wales, 1.7% and 19.4% of children were diagnosed with ASD in primary care only respectively. The male:female ratio was 3–4:1. Whilst there was considerable geographical variation in the length of follow-up available, and prevalence of ADHD and ASD, specialist diagnoses recorded in healthcare data were key to identifying children with these disorders. These data sources can be complemented by using primary care diagnoses and prescription data to identify affected children more comprehensively.
Keywords: Autism spectrum disorder; Attention deficit disorder with hyperactivity; Routinely collected health data; Data linkage
College: Faculty of Medicine, Health and Life Sciences
Funders: The ConcePTION project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under Grant Agreement No. 821520. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation program and EFPIA.