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BMC Medical Research Methodology
Published in: BMC Medical Research Methodology 1/2019

Open Access 01-12-2019 | Attention Deficit Hyperactivity Disorder | Research article

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

Authors: Helen Eke, Astrid Janssens, Johnny Downs, Richard M. Lynn, Cornelius Ani, Tamsin Ford

Published in: BMC Medical Research Methodology | Issue 1/2019

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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.
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Metadata
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
Authors
Helen Eke
Astrid Janssens
Johnny Downs
Richard M. Lynn
Cornelius Ani
Tamsin Ford
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Medical Research Methodology / Issue 1/2019
Electronic ISSN: 1471-2288
DOI
https://doi.org/10.1186/s12874-019-0820-y

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