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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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DOI (Published version): 10.1007/s10803-025-06997-4

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
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URI: https://cronfa.swan.ac.uk/Record/cronfa70232
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spelling 2026-01-29T15:27:09.2976477 v2 70232 2025-08-26 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 7f1029b5e3ee0447553de9072e79859f Alex Coldea Alex Coldea true false 73cc98a5b8e4122fdfcee5d88208b0b7 0000-0001-6745-4187 Hywel Evans Hywel Evans true false 24ce9db29b4bde1af4e83b388aae0ea1 Sue Jordan Sue Jordan true false 2025-08-26 MDA 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. Journal Article Journal of Autism and Developmental Disorders 0 Springer Science and Business Media LLC 0162-3257 1573-3432 Autism spectrum disorder; Attention deficit disorder with hyperactivity; Routinely collected health data; Data linkage 22 8 2025 2025-08-22 10.1007/s10803-025-06997-4 COLLEGE NANME Development and Engagement COLLEGE CODE MDA Swansea University Another institution paid the OA fee 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. 2026-01-29T15:27:09.2976477 2025-08-26T23:53:42.0460712 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Nursing Joanne Given 0000-0003-4921-1944 1 Olga Paoletti 0009-0009-0434-8745 2 Rebecca Bromley 0000-0003-4008-0917 3 Elisa Ballardini 4 Anna-Belle Beau 5 Claudia Bartolini 0000-0001-8630-4598 6 Anthony Caillet 7 Alex Coldea 8 Christine Damase-Michel 0000-0001-5018-0108 9 Hywel Evans 0000-0001-6745-4187 10 Sue Jordan 11 Maarit K. Leinonen 0000-0002-7631-4749 12 Marco Manfrini 0000-0003-3154-9269 13 Visa Martikainen 14 Joan K. Morris 0000-0002-7164-612x 15 Amanda J. Neville 16 Hedvig Nordeng 0000-0001-6361-2918 17 Aurora Puccini 18 Florence Coste 0000-0001-7109-388x 19 Maria Loane 0000-0002-1206-3637 20 70232__35176__903280c1d6de4a67a9f498230276323d.pdf 70232.VoR.pdf 2025-09-25T15:21:05.8565414 Output 1427383 application/pdf Version of Record true © The Author(s) 2025. This article is licensed under a Creative Commons Attribution 4.0 International License. true eng http://creativecommons.org/licenses/by/4.0/
title 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
spellingShingle 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
Alex Coldea
Hywel Evans
Sue Jordan
title_short 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_sort 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
author_id_str_mv 7f1029b5e3ee0447553de9072e79859f
73cc98a5b8e4122fdfcee5d88208b0b7
24ce9db29b4bde1af4e83b388aae0ea1
author_id_fullname_str_mv 7f1029b5e3ee0447553de9072e79859f_***_Alex Coldea
73cc98a5b8e4122fdfcee5d88208b0b7_***_Hywel Evans
24ce9db29b4bde1af4e83b388aae0ea1_***_Sue Jordan
author Alex Coldea
Hywel Evans
Sue Jordan
author2 Joanne Given
Olga Paoletti
Rebecca Bromley
Elisa Ballardini
Anna-Belle Beau
Claudia Bartolini
Anthony Caillet
Alex Coldea
Christine Damase-Michel
Hywel Evans
Sue Jordan
Maarit K. Leinonen
Marco Manfrini
Visa Martikainen
Joan K. Morris
Amanda J. Neville
Hedvig Nordeng
Aurora Puccini
Florence Coste
Maria Loane
format Journal article
container_title Journal of Autism and Developmental Disorders
container_volume 0
publishDate 2025
institution Swansea University
issn 0162-3257
1573-3432
doi_str_mv 10.1007/s10803-025-06997-4
publisher Springer Science and Business Media LLC
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Nursing{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Nursing
document_store_str 1
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description 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.
published_date 2025-08-22T05:32:06Z
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