Abstract
For many years, organizing and giving parenteral feeding, clinical manifestations of the underlying disease, use of costly drugs and complex expensive methods of examination and treatment have been associated with significant social and economic impact on the families with children suffering from short bowel syndrome. Allocation of resources among families with these children hasn’t been examined in Russia recently. Purpose. To estimate social and economic factors that influence the family with children affected by short bowel syndrome. Methods. Adult members of the families with the affected children born and living in Russia were questioned. 8 families were surveyed in 2014, 8 families – in 2019. Results. Complex social and economic aspects of treating children with short bowel syndrome in Russia were found during the conducted study. Comparative analysis of social and economic factors made it possible to estimate changes in ‘patient-social environment’ relationships within five years, briefly describe the scope of the work performed, delineate unsolved problems and discuss the measures needed to solve the problems. Conclusion. To solve social and economic problems associated with SBS, it is necessary to promote further development and expansion of the existing network of specialized centers dealing with treatment of these patients based on large pediatric hospitals in cities and federal districts of the Russian Federation. The Russian register of patients with short bowel syndrome composed by the Russian association of pediatric surgeons is a key link necessary to improve the quality of diagnostics and treatment of patients with SBS and to develop the state system of funding and provision of the patients with parenteral nutrition. A complex approach that requires participation of the state, federal clinics, charity institutions, creation of specialized centers, and local involvement of doctors will improve treatment outcomes of patients with SBS.
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