Addressing disparities in pediatric intestinal failure

About This Grant

The proposed K23 Career Development Award will enable Vikram Raghu, MD, MS, to establish an independent research career focused on improving outcomes in pediatric intestinal failure. Pediatric intestinal failure is a rare, chronic, life-altering condition that requires many children to depend on daily infusions of parenteral nutrition to survive. Complications include life-threatening sepsis events, progressive liver disease, and venous thrombosis, with mortality estimated at over 10% by six years. Despite advances in care, outcomes vary widely, and emerging evidence suggests that geographic and socioeconomic factors strongly influence survival, healthcare use, and quality of life in this population. To address this knowledge gap, Dr. Raghu has assembled a multidisciplinary team of mentors and designed a training program in health disparities research (with a focus on socioeconomic and geographic drivers), multicenter health utility measurement, patient preference elicitation, transplant policy, and leadership in research conduct. These skills will support his overarching goal of optimizing intestinal failure management through decision sciences. The central hypothesis of this project is that variation in outcomes is partly explained by differences in geographic and socioeconomic conditions, such as access to healthcare, school resources, and environmental context, independent of clinical severity. To evaluate this hypothesis, he will accomplish the following specific aims: (1) Identify the effect of the Child Opportunity Index on survival and healthcare utilization in pediatric intestinal failure; (2) Examine socioeconomic and geographic differences in quality of life among children with intestinal failure using the Child Health Utility 9D; and (3) Determine patient and caregiver priorities for addressing socioeconomic and geographic barriers to care through a modified Delphi process and discrete choice experiment. By successfully completing these training objectives and research aims, Dr. Raghu will be positioned to become an independent investigator with the expertise to integrate decision modeling, disparities research, and patient-centered methods to improve outcomes for children with intestinal failure.