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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, Helen1
  • Janssens, Astrid1, 2
  • Downs, Johnny3
  • Lynn, Richard M.4
  • Ani, Cornelius5, 6, 7
  • Ford, Tamsin1, 5
  • 1 University of Exeter Medical School, South Cloisters 1.01, St Luke’s Campus, Exeter, EX1 2LU, UK , Exeter (United Kingdom)
  • 2 University of Southern Denmark, User Perspectives, Odense C, DK-5000, Denmark , Odense C (Denmark)
  • 3 Kings College London, De Crespigny Park, Denmark Hill, London, SE5 8AF, UK , Denmark Hill (United Kingdom)
  • 4 Royal College of Paediatrics and Child Health, British Paediatric Surveillance Unit, 5-11 Theobalds Rd, London, WC1X 8SH, UK , London (United Kingdom)
  • 5 Child and Adolescent Psychiatry Surveillance System, London, UK , London (United Kingdom)
  • 6 Surrey & Borders Partnership NHS Foundation Trust, Redhill, UK , Redhill (United Kingdom)
  • 7 Centre for Psychiatry, Imperial College London, 7th Floor Commonwealth Building, Du Cane Road, London, W12 0NN, UK , London (United Kingdom)
Published Article
BMC Medical Research Methodology
Springer (Biomed Central Ltd.)
Publication Date
Aug 20, 2019
DOI: 10.1186/s12874-019-0820-y
Springer Nature


BackgroundHealth 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.MethodsThe 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.ResultsCRIS 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.ConclusionsBoth 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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