P052 National Registration of Patients With Inflammatory Bowel Disease in Brazil on Behalf of GEDIIB
Authors: Faria Mikaell , Sassaki Ligia , Andrade Adriana , Kaiser Junior Roberto , Parra Rogerio , Herrerias Giedre , Quaresma Abel , Santana Genoile , Santos Carlos , Bafutto Mauro , Miszputen Sender , Barros Jaqueline , Nascimento Catiane , Scanferla Kauyza , Moraes Antonio , Parente José , Vilela Eduardo , Saad-Hossne Rogerio , Fróes Renata 
Published: December 2021

BACKGROUND:

The IBD National Patient Registry is an initiative of the GEDIIB (Brazilian Study Group of Inflammatory Bowel Disease) who aims to survey the epidemiological profile of IBD patients through the creation of a centralized registry with data on patients monitored in public and private health services which will allow the planning of actions by the GEDIIB to facilitate the diagnosis and access to treatment of IBD, enabling the implementation of actions of the GEDIIB and the partnership with government agencies to improve care and, consequently, the quality of life of patients with IBD. This study aims to show the results of the IBD National Patient Registry.

METHODS:

A cohort study was performed. Data were collected from July 2020 to August 2021. Data were obtained from medical records and/or from patients during the regular follow-up visit and stored in pre-established records for further analysis. Only patients with an established diagnosis of CD and UC were included. The study was approved by the local ethical committees and all patients signed the consent form.

RESULTS:

In total, 797 patients were included, 60% with UC and 40% with CD; 52.9% from University Hospitals. The mean age was 44.75 ± 16.11 (12 - 92y), 59.9% female, 59.3% married, 76.4% Caucasian, 85.1% non-smokers, 30.5% completed higher education, 14.9% presented familial history of IBD. The age of onset of symptoms ranged from 3 - 79 years (32.94 ± 14.22) and 33.2% presented diarrhea as an initial manifestation. The age of diagnosis ranged from 4 - 81 years (35.07 ± 14.60) and the time from symptoms to diagnosis ranged from 1 to 2 years. The Montreal classification of CD patients were A1: 6.3%, A2: 59.9%, A3: 33.8%; L1: 38%, L2: 16.7%, L3: 43.9%, B1: 51.5%, B2: 27.8%, B3: 7.8%; perianal 12.8%. In UC, 47.8% presented pancolitis, 30.3% left-sided and 21.8% distal colitis. EIMs were present in 45.7% of patients, the most frequent being rheumatological 21.8%. Comorbidities were present in 72%, the most frequent were high blood pressure (15.3%) and diabetes (6.3%); 50% were with BMI > 25 Kg/m2. Most of the patients were in use of medical therapy (95.5%), of which 81.3% salicylate, 70.3% biological therapy, 49% immunosuppressor, 25.6% corticosteroid and 1.2% tofacitinib. Regarding biological therapy, the following medications were used: infliximab 47.6%, adalimumab 28.4%, vedolizumab 9.5%, ustekinumab 7.5%, certolizumab 2.2% and golimumab 1.3%. Eleven women used the medication during pregnancy. IBD surgery-related was performed in 69.7%, 77.2% abdominal and 22.8% perianal. Almost 30% performed more than one surgery. In 62% of patients, at least one complication was reported; most of them were infective disorders, demanding prolonged hospitalizations.

CONCLUSION:

To date, there is no IBD epidemiologic study covering the entire Brazilian territory. The results found with the registry will be fundamental to show the epidemiology of a country with continental dimensions such as Brazil. The greater the number of researchers included and from different regions of the country, the greater the representativeness of the data and may even help direct government actions on behalf of IBD patients.