RUSSIAN REGISTER OF CHILDREN WITH SHORT BOWEL SYNDROM

The Russian register of children with the «short bowel syndrome» (SBS), as a system for the regular collection, monitoring and analysis of unified clinical data on the profile patients, is created on the online platform Quinta, intended for scientific and clinical healthcare purposes.

Material and methods. In the first year of the register, information was collected on 126 children with SBS living in 42 regions of Russia who were being treated in 54 medical organizations. The analysis included anamnestic, demographic and clinical data included in the patient’s medical records.

Results. The prevalence of the SBS was 6.31 cases per 1,000,000 children under the age of 18 years. The majority (63.5%) of the patients were represented by young children. Congenital malformations and malformations were the leading (73.0%) in frequency cause of performing various surgical interventions followed by the development of SBSs. More than half (51.8%) of patients suffered 2–3 surgical interventions preceding the development of the SBS. A critically small extension of the small intestine (less than50 cm) was found in 63% of patients. Reconstructive plastic surgery aimed at increasing the area of the functionally active suction surface of the intestine was performed in 29 patients. Complete restoration of intestinal autonomy was achieved in 4 patients.

The conclusion. The register is intended to improve the quality of medical care for patients with SBS on the basis of forming a single professional information space for expert support of medical decisions, interdisciplinary interaction of specialists, monitoring of basic medical, social and resource indicators, and objective evaluation of the effectiveness of various medical technologies.