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How to measure the need for transition to adult services among young people with Attention Deficit Hyperactivity Disorder (ADHD): a comparison of surveillance versus case note review methods

Eke, Helen; Janssens, Astrid; Downs, Johnny; Lynn, Richard M; Ani, Cornelius; Ford, Tamsin; (2019) How to measure the need for transition to adult services among young people with Attention Deficit Hyperactivity Disorder (ADHD): a comparison of surveillance versus case note review methods. BMC Medical Research Methodology , 19 (1) , Article 179. 10.1186/s12874-019-0820-y. Green open access

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Abstract

Background: Health services have not provided adequate support for young people with long term health conditions to transfer from child to adult services. National Institute of Health and Care (NICE) guidance on transition has been issued to address these gaps. However, data are often sparse about the number of young adults who might need to transition. Using Attention Deficit Hyperactivity Disorder (ADHD) as an exemplar, this study used an existing surveillance system and a case note review to capture the incidence of the transition process, and compared and contrasted the findings.// Methods: The Child and Adolescent Psychiatry Surveillance System (CAPSS) was used to estimate the incident transition of young people with Attention Deficit Hyperactivity Disorder (ADHD) from child to adult services. This involves consultant child and adolescent psychiatrists from the United Kingdom (UK) and Republic of Ireland (ROI) reporting relevant young people as they are seen in clinics. In parallel, a case note review was conducted using the Maudsley Biomedical Research Centre (BRC) Clinical Records Interactive Search (CRIS). The study period ran for twelve months with a nine month follow up to see how the transition proceeded.// Results: CRIS identified 76 cases in the study period, compared to 18 identified using surveillance via CAPSS. Methodological issues were experienced using both methods. Surveillance issues; eligibility criteria confusion, reporting errors, incomplete questionnaires, difficulties contacting clinicians, and surveillance systems do not cover non-doctors and psychiatrists who are not consultants. Case note review issues using CRIS included the need for researchers to interpret clinical notes, the availability and completeness of data in the notes, and data limited to the catchment of one particular mental health trust.// Conclusions: Both methods demonstrate strengths and weaknesses; the combination of both methods in the absence of strong routinely collected data, allowed a more robust estimate of the level of need for service planning and commissioning.

Type: Article
Title: How to measure the need for transition to adult services among young people with Attention Deficit Hyperactivity Disorder (ADHD): a comparison of surveillance versus case note review methods
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s12874-019-0820-y
Publisher version: https://doi.org/10.1186/s12874-019-0820-y
Language: English
Additional information: © The Author(s), 2019. This is an Open Access article distributed under the terms of the Creative Commons Attribution Licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. https://creativecommons.org/licenses/by/4.0/
Keywords: Surveillance, CAPSS, CRIS, Case note review, ADHD, Transition, NICE
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept
URI: https://discovery-pp.ucl.ac.uk/id/eprint/10177223
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