The consortium project INTEGRATE-ADHD - Comparison and integration of administrative and epidemiological ADHD diagnostic data by clinical assessment: study description and sample characteristics

Background The consortium project INTEGRATE-ADHD examines differences between administrative and epidemiologically parent-reported Attention-deficit/hyperactivity disorder (ADHD) diagnostic data of children and adolescents in Germany. Therefore, parents of youths with an administrative ADHD diagnoses were surveyed using the questionnaires of the German Health Interview and Examination Survey for Children and Adolescents (KiGGS) and a subsample was clinically examined. Methods Parents of children and adolescents insured with the third largest German statutory health insurance DAK-Gesundheit with at least one confirmed administrative ADHD diagnosis in one quarter of the insurance year 2020 were surveyed online. The epidemiological questionnaire contained information on ADHD diagnosis, disorder-specific and comorbid psychopathology, health care utilisation, quality and satisfaction with care, risk and protective factors, and health-related quality of life. A subsample participated in a guideline-based clinical online assessment. Administrative, epidemiological and clinical data were linked on person-level. Results A total of n =  5,461 parents of children and adolescents with an administratively documented ADHD diagnosis (mean age = 12.5 years, 25.4% girls) responded to the online questionnaire (response rate: 21.5%). A representative subsample consisting of 202 families participated in the clinical online assessment. In 201 children and adolescents, it was possible to determine whether ADHD was clinically present. Conclusion Combining administrative, epidemiological and clinical ADHD diagnostic data on person-level, the consortium project INTEGRATE-ADHD offers an innovative and unique data-linkage approach that will provide a better understanding of the meaning and validity of ADHD prevalence data originating from various data sources. In addition, information on treatment satisfaction in affected child and adolescents and their families and potential deficits of health care in the context of ADHD as well as disorder-related direct health care costs may be derived.