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Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?

Kate Langley Orcid Logo, Marcos del Pozo Banos Orcid Logo, Søren Daalsgard, Shantini Paranjothy Orcid Logo, Lucy Riglin, Ann John Orcid Logo, Anita Thapar Orcid Logo

BMJ Open, Volume: 13, Issue: 8, Start page: e071851

Swansea University Authors: Marcos del Pozo Banos Orcid Logo, Ann John Orcid Logo

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DOI (Published version): 10.1136/bmjopen-2023-071851

Abstract

Objectives: We investigated the feasibility and validity of establishing a nationwide e-cohort of individuals with a diagnosis of ADHD and/or ASD for future longitudinal research. Design: Individuals with a childhood diagnosis of ADHD/ASD as recorded on routinely available healthcare datasets were c...

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Published in: BMJ Open
ISSN: 2044-6055 2044-6055
Published: BMJ 2023
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Design: Individuals with a childhood diagnosis of ADHD/ASD as recorded on routinely available healthcare datasets were compared with matched controls and a sample of directly assessed individuals with ADHD.Setting: This study utilised data from the Welsh Secure Anonymised Information Linkage (SAIL) Databank in Wales, UK. Routinely collected data from primary care, Emergency Department and hospital admissions were linked at person level.Participants: All individuals in Wales, UK born between 01/01/1991 and 31/12/2000. Individuals with a recorded diagnosis of ADHD and/or ASD by age 18 years were identified using ICD-10 and NHS Read codes and matched to three controls each and 154 individuals with ADHD recruited from an established research study.Outcome measures: Recorded service use for anxiety and depression, alcohol and drug use and self-harm including Emergency Department use in young adulthood (age 16 years to 25).Results: 7726 individuals had a recorded diagnosis of ADHD (80% male) and 5001 of ASD (79% male); 1.4% and 0.9% of the population respectively. Cox’s regression analyses showed ADHD was associated with increased risks of anxiety/depression (HR:2.36, 95% CI:2.20,2.53), self-harm (HR: 5.70, 95% CI:5.07,6.40), alcohol (HR:3.95, 95%CI:3.42,4.56), drug use (HR:5.88, 95%CI:5.08,6.80) and Emergency department service use (HR:1.36, 95%CI:1.31,1.41). Those with ASD were at increased risk of anxiety/depression (HR:2.11, 95%CI: 1.91,2.34), self-harm (HR:2.93, 95%CI: 2.45,3.50) and drug use (HR:2.21, 95%CI: 1.66,2.95) but not alcohol use. 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spelling v2 64072 2023-08-14 Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets? f141785b1c0ab9efe45665d35c081b84 0000-0003-1502-389X Marcos del Pozo Banos Marcos del Pozo Banos true false ed8a9c37bd7b7235b762d941ef18ee55 0000-0002-5657-6995 Ann John Ann John true false 2023-08-14 HDAT Objectives: We investigated the feasibility and validity of establishing a nationwide e-cohort of individuals with a diagnosis of ADHD and/or ASD for future longitudinal research. Design: Individuals with a childhood diagnosis of ADHD/ASD as recorded on routinely available healthcare datasets were compared with matched controls and a sample of directly assessed individuals with ADHD.Setting: This study utilised data from the Welsh Secure Anonymised Information Linkage (SAIL) Databank in Wales, UK. Routinely collected data from primary care, Emergency Department and hospital admissions were linked at person level.Participants: All individuals in Wales, UK born between 01/01/1991 and 31/12/2000. Individuals with a recorded diagnosis of ADHD and/or ASD by age 18 years were identified using ICD-10 and NHS Read codes and matched to three controls each and 154 individuals with ADHD recruited from an established research study.Outcome measures: Recorded service use for anxiety and depression, alcohol and drug use and self-harm including Emergency Department use in young adulthood (age 16 years to 25).Results: 7726 individuals had a recorded diagnosis of ADHD (80% male) and 5001 of ASD (79% male); 1.4% and 0.9% of the population respectively. Cox’s regression analyses showed ADHD was associated with increased risks of anxiety/depression (HR:2.36, 95% CI:2.20,2.53), self-harm (HR: 5.70, 95% CI:5.07,6.40), alcohol (HR:3.95, 95%CI:3.42,4.56), drug use (HR:5.88, 95%CI:5.08,6.80) and Emergency department service use (HR:1.36, 95%CI:1.31,1.41). Those with ASD were at increased risk of anxiety/depression (HR:2.11, 95%CI: 1.91,2.34), self-harm (HR:2.93, 95%CI: 2.45,3.50) and drug use (HR:2.21, 95%CI: 1.66,2.95) but not alcohol use. The ADHD e-cohort were similar to the directly assessed cohort.Conclusions: Our identification strategy demonstrated the feasibility of establishing a large e-cohort of those with ADHD/ASD with expected patterns of poorer early adult outcomes, demonstrating a valid method of identifying large samples for future longitudinal studies without selective attrition. Journal Article BMJ Open 13 8 e071851 BMJ 2044-6055 2044-6055 ADHD, ASD, childhood diagnosis, Wales, SAIL Databank 31 8 2023 2023-08-31 10.1136/bmjopen-2023-071851 http://dx.doi.org/10.1136/bmjopen-2023-071851 COLLEGE NANME Health Data Science COLLEGE CODE HDAT Swansea University Another institution paid the OA fee Wellcome Trust Institutional Strategic Support Fund awarded by Cardiff University (Grant ref: AC1710IF04), National Centre for Mental Health (NCMH) funded by Health and Care Research Wales (Grant ref: 517191), the Wolfson Foundation. AC1710IF04, 517191 2023-09-08T11:36:29.5563761 2023-08-14T15:33:57.3018210 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine Kate Langley 0000-0002-2033-2657 1 Marcos del Pozo Banos 0000-0003-1502-389X 2 Søren Daalsgard 3 Shantini Paranjothy 0000-0002-0528-3121 4 Lucy Riglin 5 Ann John 0000-0002-5657-6995 6 Anita Thapar 0000-0002-3689-737x 7 64072__28486__e6042b34403742c5a1b7deb01be2c2a7.pdf 64072.VOR.pdf 2023-09-08T11:33:35.3667767 Output 892241 application/pdf Version of Record true © Author(s) 2023. Distributed under the terms of a Creative Commons Attribution 4.0 License (CC BY 4.0). true eng https://creativecommons.org/licenses/by/4.0/
title Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?
spellingShingle Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?
Marcos del Pozo Banos
Ann John
title_short Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?
title_full Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?
title_fullStr Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?
title_full_unstemmed Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?
title_sort Can a nation-wide e-cohort of ADHD and ASD in childhood be established using Welsh routinely available datasets?
author_id_str_mv f141785b1c0ab9efe45665d35c081b84
ed8a9c37bd7b7235b762d941ef18ee55
author_id_fullname_str_mv f141785b1c0ab9efe45665d35c081b84_***_Marcos del Pozo Banos
ed8a9c37bd7b7235b762d941ef18ee55_***_Ann John
author Marcos del Pozo Banos
Ann John
author2 Kate Langley
Marcos del Pozo Banos
Søren Daalsgard
Shantini Paranjothy
Lucy Riglin
Ann John
Anita Thapar
format Journal article
container_title BMJ Open
container_volume 13
container_issue 8
container_start_page e071851
publishDate 2023
institution Swansea University
issn 2044-6055
2044-6055
doi_str_mv 10.1136/bmjopen-2023-071851
publisher BMJ
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 Swansea University Medical School - Medicine{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Medicine
url http://dx.doi.org/10.1136/bmjopen-2023-071851
document_store_str 1
active_str 0
description Objectives: We investigated the feasibility and validity of establishing a nationwide e-cohort of individuals with a diagnosis of ADHD and/or ASD for future longitudinal research. Design: Individuals with a childhood diagnosis of ADHD/ASD as recorded on routinely available healthcare datasets were compared with matched controls and a sample of directly assessed individuals with ADHD.Setting: This study utilised data from the Welsh Secure Anonymised Information Linkage (SAIL) Databank in Wales, UK. Routinely collected data from primary care, Emergency Department and hospital admissions were linked at person level.Participants: All individuals in Wales, UK born between 01/01/1991 and 31/12/2000. Individuals with a recorded diagnosis of ADHD and/or ASD by age 18 years were identified using ICD-10 and NHS Read codes and matched to three controls each and 154 individuals with ADHD recruited from an established research study.Outcome measures: Recorded service use for anxiety and depression, alcohol and drug use and self-harm including Emergency Department use in young adulthood (age 16 years to 25).Results: 7726 individuals had a recorded diagnosis of ADHD (80% male) and 5001 of ASD (79% male); 1.4% and 0.9% of the population respectively. Cox’s regression analyses showed ADHD was associated with increased risks of anxiety/depression (HR:2.36, 95% CI:2.20,2.53), self-harm (HR: 5.70, 95% CI:5.07,6.40), alcohol (HR:3.95, 95%CI:3.42,4.56), drug use (HR:5.88, 95%CI:5.08,6.80) and Emergency department service use (HR:1.36, 95%CI:1.31,1.41). Those with ASD were at increased risk of anxiety/depression (HR:2.11, 95%CI: 1.91,2.34), self-harm (HR:2.93, 95%CI: 2.45,3.50) and drug use (HR:2.21, 95%CI: 1.66,2.95) but not alcohol use. The ADHD e-cohort were similar to the directly assessed cohort.Conclusions: Our identification strategy demonstrated the feasibility of establishing a large e-cohort of those with ADHD/ASD with expected patterns of poorer early adult outcomes, demonstrating a valid method of identifying large samples for future longitudinal studies without selective attrition.
published_date 2023-08-31T11:36:30Z
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