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.

Hintergund: Durch die Zunahme der älteren Bevölkerung steigt die Anzahl altersbedingter Erkrankungen und damit der Bedarf an geriatrischen Versorgungsleistungen. In ländlichen Regionen mit geringer Bevölkerungsdichte und wenigen Leistungserbringern besteht die Gefahr einer unzureichenden Versorgung. Ziel der Studie: Ziel war die Identifikation von Versorgungslücken und präferierierten Verbesserungsansätzen in ländlichen Regionen aus Sicht ansässiger Leistungserbringer und Akteure. Methodik: 1.545 Leistungserbringer und Akteure aus zwei ländlichen Regionen wurden standardisiert zur Versorgungssituation (Bewertung durch Schulnoten) sowie zu Verbesserungsansätzen und Problemen (einfache Häufigkeiten) befragt. Die Antworten der Teilnehmer wurden nach ihrem Dienstsitz nach dem Konzept der Zentralen Orte (Oberzentren und Mittel-und Grundzentren) kategorisiert und ausgewertet. Ergebnisse: 348 Leistungserbringer und Akteure nahmen teil (Response: 22,5%). Die ambulante und stationäre Versorgungssituation in der Geriatrie wurde im Mittel mit ,,befriedigend'' bewertet. Lange Wartezeiten auf Facharztbehandlung gefährden die geriatrische Versorgung am häufigsten (71,0%). Signifikante Unterschiede zwischen den Raumkategorien bestanden in der Bewertung der Abdeckung der geriatrischen Versorgung durch stationäre Einrichtungen (p = 0.0018) und der Erreichbarkeit medizinischer Einrichtungen mit öffentlichem Nahverkehr (p = < 0.001). Diese wurden in den Oberzentren besser bewertet. Der präferierte Ansatz der Teilnehmer zur Verbesserung der Versorgung war die berufsgruppenübergreifende Vernetzung (62,3%) der Akteure. Schlussfolgerung: In den ländlichen Regionen bestehen Versorgungsprobleme in der Geriatrie bei der Erreichbarkeit und durch Wartezeiten insbesondere in den Mittel-und Grundzentren. Lösungsansätzen im Sinne einer regionalen, sektorübergreifenden und interprofessionellen Versorgung wurde mehrheitlich zugestimmt.

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 quality of life and may lead to an increased rate of complications. The aim of this study was to determine diagnostic delay in PIBD and to identify potential influencing factors. Therefore, data of the German-language 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), 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. UC was associated with earlier diagnosis than CD (hazard ratio = 1.26; 95% CI: 1.05–1.50; p = 0.01). Only a few factors influencing the diagnostic delay have been verified. 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.

Background: Early diagnosis is mandatory for the medical care of children and adolescents with pediatric-onset inflammatory bowel disease (PIBD). International guidelines (‘Porto criteria’) of the European Society for Pediatric Gastroenterology, Hepatology and Nutrition recommended adequate medical diagnostic procedures in PIBD. Since 2004, German and Austrian pediatric gastroenterologists document diagnostic and treatment data in the patient registry CEDATA-GPGE. The aim of this retrospective study was to analyze whether the registry CEDATA-GPGE reflects the Porto criteria and to what extent diagnostic measures of PIBD according to the Porto criteria are documented. Methods: Data of CEDATA-GPGE were analyzed for the period December 2013 to December 2018. Variables representing the Porto criteria for initial diagnostic were identified and categorized. The average of the number of measures documented in each category was calculated for the diagnoses CD, UC, and IBD-U. Differences between the diagnoses were tested by Chi-square test. Data on possible differencesbetween data documented in the registry and diagnostic procedures that were actually performed were obtained via a sample survey. Results: There were 547 patients included in the analysis. The median age of patients with incident CD (n=289) was 13.6 years (IQR: 11.2-15.2), of patients with UC (n=212) 13.1 years (IQR: 10.4-14.8) and of patients with IBD-U (n=46) 12.2 years (IQR: 8.6-14.7). The variables identified in the registry fully reflect the recommendations by the Porto criteria. Only the disease activity indices PUCAI and PCDAI were not included. The category ‘Case history’ were documented for the largest part (78.0%), the category ‘Imaging of the small bowel’ were documented least frequently (39.1%). In patients with CD, the categories ‘Imaging of the small bowel’ (χ2=20.7, Cramer-V=0.2, p<0.001) and ‘Puberty stage’ (χ2=9.8, Cramer-V=0.1, p<0.05) were documented more often than in patients with UC and IBD-U. Conclusion: The registry fully reproduces the guideline’s recommendations for the initial diagnosis of PIBD. The proportion of documented diagnostic examinations varied within the diagnostic categories and between the diagnoses. Despite technological innovations, time and personnel capacities at participating centers and study center are necessary to ensure reliable data entry and to enable researchers to derive important insights into guideline-based care.