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Main results have been published. Data are still being used for additional analysis and student projects. Requests for results presentation welcome.

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Quality of care in adolescents with inflammatory bowel disease transitioning from pediatric to adult care

Description

Children and adolescents with inflammatory bowel diseases (IBD) face significant challenges in their physical and psychosocial development. Highly specialized integrative care is recommended.

In Germany and Austria, pediatric gastroenterologists run a clinical registry to monitor and improve the care of children with IBD. Little is known about the fate of the documented patients when they come of age. Specifically we wished to know whether pediatric specialist care on the one hand, and adult gastroenterology on the other hand are apt to appropriately deal with the specific problems of chronic disease in adolesecence. The project aims to identifiy areas for improvement in the cooperation between different care givers in the transitional phase between child- and adulthood.

Therefore a survey was performed in young persons with IBD, aged 15 to 25, in cooperation with the German Language Pediatric IBD Registry (CEDATA), the Saxonian Pediatric IBD registry, and the Patient organization, DCCV e.V.. The Survey focused on the patient perspective, in particular patient expections and patient satisfaction.

615 persons participated in the survey. Main results have been published. We are still using the data, e.g. in the context of modeling highly skewed data.  

Publications:

Webmc4iaster (david.snj6pxass@uol.dex2) (Changed: 2020-01-23)