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

克罗恩病和溃疡性结肠炎，统称为炎症性肠病(IBD)，是慢性疾病 无法治愈的疾病。虽然美国(U.S.)是许多不同种族和民族的人的家园 背景：IBD在这些种族和民族中的发病率和流行率一直不是很好 在即将完成的调查结果中描述了“发病率、流行率、 IBD患者的治疗和结果(投入)“研究由美国疾病控制与预防中心资助。 研究表明，在中国，医生诊断的IBD患病率在非白人人群中低近50% 美国，这与25%的IBD患者尤其相关，这些患者被诊断为儿童发病的IBD 这种诊断延迟与复杂疾病风险的增加有关。因此，及时诊断和 在IBD人群中，最重要的是有效的治疗，以将永久性损害降至最低。 此外，人们越来越意识到健康的社会决定因素(SDOH)对健康的影响 IBD的差异。SDOH是影响健康结果的社会决定变量，包括种族主义、 歧视、教育、收入、语言和识字技能以及获得营养。在成人IBD人群中， 众所周知，种族、民族和社会经济差异会影响住院、疾病管理和 发病率。其他心理社会和人口因素，包括社会心理压力等有害因素 和创伤、粮食不安全、护理障碍；以及保护性障碍，如适应性应对、复原力和 足够的健康素养，也可能改变儿童和成人IBD患者的疾病结局。 非裔美国人往往面临更大的护理障碍，更高的心理社会压力，以及更低的 健康素养水平。这表明，心理社会因素和SDOH可能会使非裔美国人患者 结果不佳的风险要高得多。在本研究中，我们将：1)描述关键的心理社会因素和 SDOH影响IBD患者的及时诊断、健康相关的生活质量和疾病预后 重点关注非裔美国青少年和成年人；2)利用定性方法确定关键障碍和 促进对卫生知识敏感的护理，包括及时诊断和有效管理IBD，用于 以非裔美国青少年和成年人为重点的IBD患者；以及3)提高认识和教育 计划使医生更有可能诊断和有效管理这些患者，并为患者 和护理者增强他们的健康信心，更多地参与他们的医疗决策， 同时满足健康素养的需求。这项工作的结果将为解决 非裔美国人和非裔美国人在早期和适当时机诊断和治疗IBD方面的差异 建立有效的意识和教育方案，可以在全国范围内实施。

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.