Clinical characteristics of 320 pediatric Crohn’s disease patients registered in the nationwide Crohn’s disease registry in Poland

Introduction: Inflammatory bowel disease, particularly Crohn’s disease (CD), is a rising problem in pediatric gastroenterology. Limited information is available on demographic and clinical aspects of pediatric CD in Poland.

Aim: Preliminary data on demographic and clinical characteristic of pediatric CD in Poland based on the web-based prospective registry in order to gather reliable information to identify appropriate treatment strategies.

Material and methods: In September 2005 a web-based prospective registry of CD patients was initiated in Poland. Ten institutes (9 academic centers, 1 referred regional hospital) took part in the project with the object of obtaining the demographic and clinical data of pediatric CD patients across the country. With this end in view, a computerized questionnaire was used and the collected data were sent prospectively to a central registry for analysis. The following data were analyzed: demographics, family history, location and behavior of disease, extraintestinal manifestation, coexisting diseases, diagnostic work-up, and medical treatment including surgical intervention.

Results: Through the period of 4 years, 320 patients (male : female – 191 : 129) aged below 16 years with CD diagnosed at the mean age of 9.2 ±6.8 years were incorporated in the registry. Early onset of disease (age at diagnosis below 5 years) was recorded in 68 children (21.25%). Positive family history was reported for 16 patients (5%). The predominant localization of lesions described using the Montreal classification (L1 for small intestine, L2 for colon, L3 for ileocolon, and L4 for the upper gastrointestinal tract) was ileocolon (L3) – 217 patients (67.8%). The predominant behavior of disease was non-stricturing and non-penetrating – 225 patients (70.32%). Extraintestinal manifestation was reported in 20 patients (6.25%). Coexisting diseases occurred in 35 patients (10.93%). The predominant initial therapy was mesalazine (227 patients – 70.1%). Seventeen patients (5.31%) required a surgical intervention.

Conclusions: This study provides comprehensive information on demographic and clinical aspects of pediatric CD in Poland. Our results are consistent with the previously published reports from other countries in terms of age of onset and male predominance in pediatric CD patients. Our conclusions are as follows: information needs to be well defined, validated at entry, and updated at every visit, which facilitates our work and makes the data more reliable.