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      Differences in frequency between administrative and parent-reported ADHD diagnosis data of children and adolescents taking sociodemographic characteristics into account – Results from the consortium project INTEGRATE-ADHD

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          Abstract

          Background

          In the project INTEGRATE-ADHD, administrative and parent-reported ADHD diagnosis data of children and adolescents were linked at person level for the first time in Germany. This contribution analyses discrepancies between the data sources, considering sociodemographic characteristics.

          Methods

          Parents of 5,461 0- to 17-year-olds insured with the German statutory health insurance company DAK-Gesundheit in 2020, who had a confirmed administrative diagnosis of ADHD (ICD-10 F90.0-9) in at least one quarter (M1Q criterion), were surveyed online about their child’s ADHD diagnosis and other health and care-related topics. Using logistic regression, associations between the presence of a parental report of the child’s administrative ADHD diagnosis and sociodemographic predictors were analysed.

          Results

          71.6 % of parents reported their child’s administrative diagnosis of ADHD in the survey. The diagnosis was significantly less likely to be reported by parents of girls, younger children, children with a migration background and children from nuclear families with both biological parents. There were no differences with regard to parental education, urbanisation (urban/rural) or density of care. Bivariate findings were confirmed in the multivariable model.

          Conclusions

          Approximately one third of parents do not report their child’s administrative diagnosis of ADHD. The likelihood of parental reporting varies according to sociodemographic factors. This should be considered when contextualising the data sources in the future.

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          Most cited references49

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            The challenge of comprehensively mapping children's health in a nation-wide health survey: Design of the German KiGGS-Study

            Background From May 2003 to May 2006, the Robert Koch Institute conducted the German Health Interview and Examination Survey for Children and Adolescents (KiGGS). Aim of this first nationwide interview and examination survey was to collect comprehensive data on the health status of children and adolescents aged 0 to 17 years. Methods/Design Participants were enrolled in two steps: first, 167 study locations (sample points) were chosen; second, subjects were randomly selected from the official registers of local residents. The survey involved questionnaires filled in by parents and parallel questionnaires for children aged 11 years and older, physical examinations and tests, and a computer assisted personal interview performed by study physicians. A wide range of blood and urine testing was carried out at central laboratories. A total of 17 641 children and adolescents were surveyed – 8985 boys and 8656 girls. The proportion of sample neutral drop-outs was 5.3%. The response rate was 66.6%. Discussion The response rate showed little variation between age groups and sexes, but marked variation between resident aliens and Germans, between inhabitants of cities with a population of 100 000 or more and sample points with fewer inhabitants, as well as between the old West German states and the former East German states. By analysing the short non-responder questionnaires it was proven that the collected data give comprehensive and nationally representative evidence on the health status of children and adolescents aged 0 to 17 years.
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              The longitudinal BELLA study: design, methods and first results on the course of mental health problems.

              The high prevalence of mental health problems (MHP) in childhood and adolescence is a global health challenge of the 21st century. Information about age of onset, persistence and development of MHP in young people is necessary to implement effective prevention and intervention strategies. We describe the design and methods of the longitudinal BELLA study, which investigates developmental trajectories of MHP from childhood into adulthood, their determinants, and the utilisation of mental health services. First results on the developmental course of MHP in children and adolescents are reported over a 6-year period. The BELLA study is the mental health module of the German National Health Interview and Examination Survey for children and adolescents (KiGGS). BELLA examines the mental health and well-being of children and adolescents aged 7-17 years (a representative subsample of KiGGS, n = 2,863 at baseline). Standardised screening measures served to identify MHP at baseline and at follow-ups (1, 2, and 6 years later). Among children and adolescents participating at all measurement points (n = 1,255), 10 % showed clinically significant MHP at baseline (n = 130). Over the 6-year period, 74.3 % showed no signs of MHP (n = 933), 15.5 % had remitted (n = 194), 2.9 % showed persistent (n = 36) and 7.3 % acute or recurrent MHP (n = 92). Overall, MHP were more likely to occur between the age of 7 and 12 and after the age of 19 years. Regarding mental health service use, 33 % of the participants with acute or recurrent MHP (n = 30) and 63.9 % with persistent MHP used mental health services (n = 23). Mental health problems in children and adolescents have a high risk to persist into adulthood. In children and adolescents a low rate of mental health service use was observed, even among those with mental health problems.

                Author and article information

                Journal
                J Health Monit
                J Health Monit
                JoHM
                Journal of Health Monitoring
                Robert Koch Institute (Nordufer 20 13353 Berlin, Germany )
                2511-2708
                18 September 2024
                September 2024
                : 9
                : 3
                : e12674
                Affiliations
                [1 ] Robert Koch Institute , Department of Epidemiology and Health Monitoring, Berlin, Germany
                [2 ] University Hospital Würzburg, Centre of Mental Health , Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, Würzburg, Germany
                [3 ] University Medical Centre Hamburg-Eppendorf , Department of Child and Adolescent Psychiatry, Psychotherapy and Psychosomatics, Research Section ‘Child Public Health’, Hamburg, Germany
                [4 ] Vandage GmbH , Bielefeld, Germany
                [5 ] University of Würzburg, Institute of Clinical Epidemiology and Biometry , Würzburg, Germany
                [6 ] University Hospital Würzburg, Clinical Trial Centre , Würzburg, Germany
                [7 ] University Hospital Würzburg, Institute for Medical Data Sciences , Würzburg, Germany
                [8 ] DAK-Gesundheit , Hamburg, Germany
                Author notes
                Dr. Robert Schlack SchlackR@ 123456rki.de

                The German version is available at www.rki.de/jhealthmonit

                Article
                10.25646/12674
                11459218
                39411327
                0fe38012-d61b-43fe-9741-be35d4b8a985
                © Robert Koch Institute. All rights reserved unless explicitly granted.

                This work is licensed under a Creative Commons Attribution 4.0 International License.

                History
                : 17 April 2024
                : 23 July 2024
                Page count
                Figures: 1, Tables: 2, Equations: 0, References: 59, Pages: 13
                Funding
                Funded by: German Innovation Fund of the German Federal Joint Committee (Gemeinsamer Bundesausschuss)
                Award ID: 01VSF19014
                Award Recipient : INTEGRATE-ADHD
                The project ‘INTEGRATE-ADHD’ was funded by the German Innovation Fund of the German Federal Joint Committee (Gemeinsamer Bundesausschuss) under the funding code 01VSF19014.
                Categories
                Focus

                adhd,administrative,epidemiological,parent report,survey,prevalence,data linkage,children,adolescents

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