Rationale: In the United States, over 3.1 million people suffer from inflammatory bowel disease (IBD) which includes Crohn?s Disease and Ulcerative Colitis. Most patients will require major surgery in their lifetime. As the incidence of IBD rises in racial/ethnic minority populations, surgical disparities are emerging with significantly worse outcomes for African-Americans compared to whites. Recent data has suggested a potential role of health literacy in determining surgical outcomes (and disparities), but, to our knowledge, no literacy-based interventions in surgery exist. This project aims to address surgical disparities through the development of a health literate surgical care program to eliminate disparities for African-Americans with IBD. These project goals would support the core missions of the NIHMD and Healthy People 2020 in achieving health equity for all patients. Objectives: My long-term career objective is to become an independent researcher focused on identifying, understanding and eliminating surgical disparities. Through this career development award, my remaining gaps in knowledge and skills will be filled through a personalized three-year training program that will include didactics (for an MSPH), mini-sabbaticals and mentorship by an experienced mentor team. These plans will support my research goals: (i) to identify factors that impact health literacy in current surgical care programs and (ii) to develop a health literate and culturally-competent surgical care program through stakeholder engagement. Design and Methods: Our study will use a mixed-method formative research approach with significant stakeholder engagement. Guided by the Health Literacy and Outcomes Framework, we will first use qualitative methods (key informant interviews/focus groups) to identify gaps in current surgical care that may impact an African-American IBD patient?s capacity to obtain, process and understand surgical information (Specific Aim 1a). We will then develop stakeholder-centered quantitative assessments to confirm the qualitative findings (Specific Aim 1b). We will finally use an iterative multidimensional stakeholder engagement process to design a health literate surgical care program (?Enhancing Health Literacy in Surgery? or EHLIS) (Specific Aim 2). We will conduct this study at a high-volume, tertiary-care IBD center that serves a high-proportion of African-Americans with IBD. The results of this study will provide the data for an R21 submission to examine EHLIS feasibility, which, in turn, will inform a larger randomized trial (R01/PCORI). Significance: In conjunction with my career development/training plans, this project will inform the development of a health literate intervention focused on improving surgical outcomes and eliminating disparities in African- American IBD patients undergoing major surgery. Lessons learned could have much broader implications in other surgical populations as surgical disparities exist in all disciplines and innovative interventions are needed.
African-Americans with inflammatory bowel disease (IBD) are often faced with major surgery and represent a growing population at high-risk for surgical disparities. The proposed research focuses on eliminating these disparities by developing a surgical care program crafted with health literacy-based interventions. Successful development of a health literate surgical care program has the potential to positively impact the African-American IBD population and may offer a patient-centered approach to addressing surgical disparities in other vulnerable surgical populations.
