RESUMO
Care for youth with pediatric inflammatory bowel disease (IBD) is the focus of ImproveCareNow (ICN), an international learning health system devoted to quality care and improved outcomes through collaboration, data sharing, and research. Known to be significantly disruptive to normative social development and quality of life, pediatric IBD significantly increases the risk of internalizing distress and secondary developmental sequelae. While multidisciplinary support including psychosocial care (from social workers and pediatric psychologists) is growing, this evidence-based and beneficial set of services is not universally available to youth with IBD. In a survey sent to the more than 100 established ICN centers, psychosocial providers attempted to identify the coverage and practice scope of psychosocial providers within the network. Results indicated that support varies widely by service type and availability of providers. Recommendations for further research and considerations for centers seeking to expand supports are considered.
