Diagnostic delay in children with inflammatory bowel disease in the German-Austrian patient registry CEDATA-GPGE 2014–2018

Abstract

The incidence and prevalence of pediatric-onset inflammatory bowel disease (PIBD) are on the rise worldwide. Initial symptoms are often recognized with a delay, which reduces the quality of life and may lead to an increased rate of complications. The aim of this study was to determine the diagnostic delay in PIBD and to identify potential influencing factors. Therefore, data from the German-Austrian patient registry CEDATA-GPGE for children and adolescents with PIBD were analyzed for the period January 2014 to December 2018. There were 456 children identified in the data, thereof 258 children (57%) with Crohn’s disease (CD) and 198 children (43%) with Ulcerative colitis (UC). The median age was 13.3 years (interquartile range (IQR) = 10.9−15.0), and 44% were females. The median diagnostic delay was 4.1 months (IQR = 2.1–7.0) in CD and 2.4 months (IQR = 1.2–5.1) in UC (p = 0.01). UC was associated with earlier diagnosis than CD (p < 0.001). Only a few factors influencing the diagnostic delay have been verified, e.g., abdominal pain at night and if video capsule endoscopy was performed. Diagnostic delay improved over the years in participating centers, but the level of awareness needs to be high even in common symptoms like abdominal pain.

Nutritional status of pediatric patients with inflammatory bowel diseases is related to disease duration and clinical picture at diagnosis

“…In these studies, the diagnostic delay, among many factors, was related to the isolated small bowel disease and to the presence of perianal abscesses, which remains consistent with our results. Logically, earlier diagnosis was linked to worse indices of clinical disease activity, higher values of inflammatory markers, bloody diarrhea, vomiting, fever, body weight loss in IBD, and with nocturnal abdominal pain in UC 5 , 38 , 39 . The presence of solely, or mainly, EIMs as aphthous stomatitis, arthritis, skin lesions or pancreatic conditions was more often observed in CD than in UC, and significantly delayed the diagnosis 1 , 36 .…”

“…Specific symptoms as diarrhea, blood, and mucus in stool 1 might be related to red blood cells loss and micro- and macronutrients deficiencies, leading further to the body weight loss and deficits, and anemia as well. Such an overt disease manifestation shortens the time from the first symptoms to diagnosis in UC 1 , 5 , which might explain only slight decrease in the anthropometric indices of nutritional status compared to the standard.…”

“…Body weight loss or stagnation are common symptoms preceding the diagnosis of IBD, which has been reported in about 60–80% of newly diagnosed pediatric patients with CD and in about 40% of those with UC 4 , 5 . Poor nutritional status in IBD has been attributed to malabsorption, intestinal loss of energy and nutrients, dietary restrictions, lack of appetite, and to the altered nutrient metabolism and utilization 6 .…”

Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany

“…There are 103 GPGE-certi ed paediatric practices and clinics in Germany, Austria, Switzerland and the Netherlands (data from 2021). The availability of paediatric gastroenterologists and specialised centres varies between regions, leading to regional differences in access to guideline based care, which in turn may lead to a delay in diagnosis [17]. In Germany, the incidence of PIBD is estimated at 800-1500 children and adolescents [18].…”

Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany

“…There are 103 GPGE-certified paediatric practices and clinics in Germany, Austria, Switzerland and the Netherlands (data from 2021). The availability of paediatric gastroenterologists and specialised centres varies between regions, leading to regional differences in access to guideline based care, which in turn may lead to a delay in diagnosis [ 16 ]. In Germany, the incidence of PIBD is estimated at 800–1500 children and adolescents [ 17 ].…”