RFA-DP-23-002, Improving Health Outcomes for Patients with Inflammatory Bowel Disease through Evidence-based Awareness, Referral, and Education Programs

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Crohn's disease and ulcerative colitis, collectively referred to as inflammatory bowel disease (IBD), are chronic diseases with no cure. Although the United States (U.S.) is home to people of many different racial and ethnic backgrounds, the incidence and prevalence of IBD within these racial and ethnic groups had not been well described until the findings from the soon-to-be completed "Diversity within the Incidence, Prevalence, Treatment and Outcomes of Patients with IBD (INPUT)" study funded by the CDC. Findings from the INPUT study indicate that prevalence of physician diagnosed IBD is nearly 50% lower in non-White populations in the U.S. This is particularly relevant for the 25% of IBD patients that are diagnosed with pediatric-onset IBD, in which diagnostic delay is linked to an increased risk of complicated disease. Therefore, prompt diagnosis and efficient treatment are of upmost importance in IBD populations to minimize permanent impairments. Further, there is a growing awareness of the impact that social determinants of health (SDOH) have on health disparities in IBD. SDOH are socially determined variables that impact health outcomes, and include racism, discrimination, education, income, language and literacy skills, and nutrition access. In adult IBD populations, racial, ethnic, and socioeconomic disparities are known to influence hospitalization, disease management, and morbidity. Other psychosocial and demographic factors, including harmful ones, such as psychosocial stress and trauma, food insecurity, barriers to care; and protective ones, such as adaptive coping, resilience, and adequate health literacy, may also modify disease outcomes for pediatric and adult IBD patients. African Americans often experience greater barriers to care, higher rates of psychosocial stress, and lower levels of health literacy. This suggests that psychosocial factors and SDOH may put African American patients at a much higher risk for poor outcomes. In this research, we will: 1) delineate the key psychosocial factors and SDOH impacting timely diagnosis, health-related quality of life, and disease outcomes for IBD patients with a focus on African American adolescents and adults; 2) utilize qualitative methods to identify the key barriers and facilitators to health literacy-sensitive care, including timely diagnosis and effective management of IBD, for IBD patients with a focus African American adolescents and adults; and 3) create awareness and educational programs for physicians to be more likely to diagnose and effectively manage these patients, and for patients and caregivers to increase their health confidence and be more engaged in their healthcare decision making, while accommodating health literacy needs. The results of this work will provide a blueprint for addressing the disparity in early and appropriately timed diagnosis and management of IBD in African Americans and establish effective awareness and educational programs that can be implemented nationwide.