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                                    Chapter 8254We therefore evaluated the integration of personalized care across disciplines in ID care to identify care gaps and targets for improvements. The primary objective was to investigate the reporting of information on genetic etiology, including both genetic testing and genetic diagnoses in medical files, files used by psychologists and behavioral experts and therapists, and files used by professional caregivers. A secondary objective was to examine how often, at what time and how detailed, information on the genetic diagnosis was available in these files, and to investigate associated clinical and demographic factors to assess the integration of genetic diagnoses into clinical multidisciplinary care. Methods Study design and settingThis was a retrospective chart review at ‘s Heeren Loo, the largest care organization for ID in the Netherlands. We systematically recorded data on genetic etiology, including genetic testing and diagnosis, and clinical and demographic characteristics collected from files held by multidisciplinary team members involved.Care systems and study populationIndividuals receiving support or care from ‘s Heeren Loo are registered in the electronic care system (Figure 1). The system is used by all involved HCPs including behavioral scientists, to report on paramedical care, supported living, and other support. It also includes information about legal representatives. For medical care by general practitioners and ID physicians, another electronic care system is widely used.Individuals who were registered in the electronic care system and received at least two months of support or care from ‘s Heeren Loo prior to data extraction were included in the study, unless there was no consent for using their data for research. Individuals who visited an expertise center genetic syndromes at ‘s Heeren Loo were also excluded from analyses, as a genetic diagnosis is a prerequisite for receiving care by this center.Annelieke Muller sHL.indd 254 14-11-2023 09:07
                                
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