BACKGROUND: Inflammatory bowel disease (IBD) can arise at any age, with peak incidence in adolescence and young adulthood. A registry of pediatric cases of IBD offers the opportunity to document their diagnosis and treatment, with the ultimate aim of improving diagnosis and treatment in the future. METHODS: In the German-language CEDATA-GPGE registry, 3991 cases of IBD in patients less than 18 years of age were documented from 2004 to 2014. The 1257 patients who were prospectively included in the registry upon diagnosis and whose further course was documented for at least three months were analyzed in two separate groups--under 10 years old, and 10 years and above--with respect to the type and duration of their symptoms until diagnosis, the completeness of the diagnostic evaluation, the disease phenotype, and the initial treatment. RESULTS: Of the 958 patients for whom full documentation was available, 616 (64.3%) had Crohn's disease (CD), 278 (29%) had ulcerative colitis (UC), 64 (6.7%) had an unclassified IBD, and 23.2% were under 10 years old. The latency to diagnosis was longer for CD than for UC (0.5 versus 0.3 years), regardless of age. 62.5% of the CD patients had ileocolonic involvement, and more than half had involvement of the upper gastrointestinal tract. 71% of the patients with UC had subtotal colitis or pancolitis. Continuous improvement was seen in diagnostic assessment according to published guidelines. For example, in 2004/2005, 69% of patients were evaluated endoscopically with ileocolonoscopy and esophagogastroduodenoscopy; this fraction had risen to nearly 100% by 2013/2014. Similarly, the percentage of patients who underwent a diagnostic evaluation of the small intestine, as recommended, rose from 41.2% to 60.9% over the same period. The most common initial treatments were 5- amino - salicylates (86.8% CD, 100% UC) and glucocorticoids (60.6% CD, 65.6% UC). 32% of the patients with CD received exclusive enteral nutrition therapy. CONCLUSION: Most of these pediatric patients with IBD, whether in the younger or the older age group, had extensive bowel involvement at the time of diagnosis. The registry data imply that improvement in clinical course may be achieved by shortening the time to diagnosis and by closer adherence to the diagnostic and therapeutic guidelines.
BACKGROUND:Inflammatory bowel disease (IBD) can arise at any age, with peak incidence in adolescence and young adulthood. A registry of pediatric cases of IBD offers the opportunity to document their diagnosis and treatment, with the ultimate aim of improving diagnosis and treatment in the future. METHODS: In the German-language CEDATA-GPGE registry, 3991 cases of IBD in patients less than 18 years of age were documented from 2004 to 2014. The 1257 patients who were prospectively included in the registry upon diagnosis and whose further course was documented for at least three months were analyzed in two separate groups--under 10 years old, and 10 years and above--with respect to the type and duration of their symptoms until diagnosis, the completeness of the diagnostic evaluation, the disease phenotype, and the initial treatment. RESULTS: Of the 958 patients for whom full documentation was available, 616 (64.3%) had Crohn's disease (CD), 278 (29%) had ulcerative colitis (UC), 64 (6.7%) had an unclassified IBD, and 23.2% were under 10 years old. The latency to diagnosis was longer for CD than for UC (0.5 versus 0.3 years), regardless of age. 62.5% of the CD patients had ileocolonic involvement, and more than half had involvement of the upper gastrointestinal tract. 71% of the patients with UC had subtotal colitis or pancolitis. Continuous improvement was seen in diagnostic assessment according to published guidelines. For example, in 2004/2005, 69% of patients were evaluated endoscopically with ileocolonoscopy and esophagogastroduodenoscopy; this fraction had risen to nearly 100% by 2013/2014. Similarly, the percentage of patients who underwent a diagnostic evaluation of the small intestine, as recommended, rose from 41.2% to 60.9% over the same period. The most common initial treatments were 5- amino - salicylates (86.8% CD, 100% UC) and glucocorticoids (60.6% CD, 65.6% UC). 32% of the patients with CD received exclusive enteral nutrition therapy. CONCLUSION: Most of these pediatric patients with IBD, whether in the younger or the older age group, had extensive bowel involvement at the time of diagnosis. The registry data imply that improvement in clinical course may be achieved by shortening the time to diagnosis and by closer adherence to the diagnostic and therapeutic guidelines.
Authors: Natalie A Molodecky; Ing Shian Soon; Doreen M Rabi; William A Ghali; Mollie Ferris; Greg Chernoff; Eric I Benchimol; Remo Panaccione; Subrata Ghosh; Herman W Barkema; Gilaad G Kaplan Journal: Gastroenterology Date: 2011-10-14 Impact factor: 22.682
Authors: Charlotte I de Bie; Stephan Buderus; Bhupinder K Sandhu; Lissy de Ridder; Anders Paerregaard; Gabor Veres; Jorge Amil Dias; Johanna C Escher Journal: J Pediatr Gastroenterol Nutr Date: 2012-03 Impact factor: 2.839
Authors: K Frivolt; T Schwerd; K J Werkstetter; A Schwarzer; S B Schatz; P Bufler; S Koletzko Journal: Aliment Pharmacol Ther Date: 2014-04-30 Impact factor: 8.171
Authors: Charlotte I de Bie; Anders Paerregaard; Sanja Kolacek; Frank M Ruemmele; Sibylle Koletzko; John M E Fell; Johanna C Escher Journal: Inflamm Bowel Dis Date: 2013-02 Impact factor: 5.325
Authors: Dan Turner; Arie Levine; Johanna C Escher; Anne M Griffiths; Richard K Russell; Axel Dignass; Jorge Amil Dias; Jiri Bronsky; Christian P Braegger; Salvatore Cucchiara; Lissy de Ridder; Ulrika L Fagerberg; Séamus Hussey; Jean-Pierre Hugot; Sanja Kolacek; Kaija Leena Kolho; Paolo Lionetti; Anders Paerregaard; Alexander Potapov; Risto Rintala; Daniela E Serban; Annamaria Staiano; Brian Sweeny; Gigi Veerman; Gabor Veres; David C Wilson; Frank M Ruemmele Journal: J Pediatr Gastroenterol Nutr Date: 2012-09 Impact factor: 2.839
Authors: F M Ruemmele; G Veres; K L Kolho; A Griffiths; A Levine; J C Escher; J Amil Dias; A Barabino; C P Braegger; J Bronsky; S Buderus; J Martín-de-Carpi; L De Ridder; U L Fagerberg; J P Hugot; J Kierkus; S Kolacek; S Koletzko; P Lionetti; E Miele; V M Navas López; A Paerregaard; R K Russell; D E Serban; R Shaoul; P Van Rheenen; G Veereman; B Weiss; D Wilson; A Dignass; A Eliakim; H Winter; D Turner Journal: J Crohns Colitis Date: 2014-06-06 Impact factor: 10.020
Authors: Arie Levine; Sibylle Koletzko; Dan Turner; Johanna C Escher; Salvatore Cucchiara; Lissy de Ridder; Kaija-Leena Kolho; Gabor Veres; Richard K Russell; Anders Paerregaard; Stephan Buderus; Mary-Louise C Greer; Jorge A Dias; Gigi Veereman-Wauters; Paolo Lionetti; Malgorzata Sladek; Javier Martin de Carpi; Annamaria Staiano; Frank M Ruemmele; David C Wilson Journal: J Pediatr Gastroenterol Nutr Date: 2014-06 Impact factor: 3.288
Authors: Holm H Uhlig; Tobias Schwerd; Sibylle Koletzko; Neil Shah; Jochen Kammermeier; Abdul Elkadri; Jodie Ouahed; David C Wilson; Simon P Travis; Dan Turner; Christoph Klein; Scott B Snapper; Aleixo M Muise Journal: Gastroenterology Date: 2014-07-21 Impact factor: 33.883
Authors: Jan Wehkamp; Martin Götz; Klaus Herrlinger; Wolfgang Steurer; Eduard F Stange Journal: Dtsch Arztebl Int Date: 2016-02-05 Impact factor: 5.594
Authors: Nicolas Schneider; Keywan Sohrabi; Henning Schneider; Klaus-Peter Zimmer; Patrick Fischer; Jan de Laffolie Journal: Front Med (Lausanne) Date: 2021-05-24
Authors: Jan de Laffolie; Martin W Laass; Dietmar Scholz; Klaus-Peter Zimmer; Stephan Buderus Journal: Gastroenterol Res Pract Date: 2017-12-05 Impact factor: 2.260