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

RFA-DP-23-002，通过循证意识、转诊和教育计划改善炎症性肠病患者的健康结果

• 批准号: 10762917
• 负责人: Daniel I Chu
• 金额: $ 44.7万
• 依托单位: CROHN'S AND COLITIS FDN OF AMERICA, INC.
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-30 至 2028-09-29
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10762917
• 关键词: RFA; DP; 23; 002; Improving; RFA; DP; 23; 002; Improving

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.

克罗恩病和溃疡性结肠炎，统称为炎症性肠病（IBD），是慢性 无法治愈的疾病。尽管美国（美国）是许多不同种族和种族的人的家园 这些种族和种族中IBD的背景，IBD的发病率和流行率不佳 直到即将结束的“发生率的多样性，流行率， IBD患者的治疗和结果（输入）”由CDC资助的研究结果。 研究表明，诊断为IBD的医师的患病率在非白人种群中降低了近50％ 美国这与25％的IBD患者尤其重要 哪些诊断延迟与复杂疾病的风险增加有关。因此，及时诊断和 在IBD种群中，有效的治疗至关重要，以最大程度地减少永久性损害。 此外，人们越来越认识到社会健康决定因素（SDOH）对健康的影响 IBD的差异。 SDOH是影响健康结果的社会确定的变量，包括种族主义， 歧视，教育，收入，语言和扫盲技能以及营养获取。在成人IBD人群中， 已知种族，种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统计学因素，包括有害的因素，例如社会心理压力 和创伤，粮食不安全，护理障碍；和保护性的，例如自适应应对，韧性和 足够的健康素养也可能改变儿科和成人IBD患者的疾病预后。 非洲裔美国人通常会遇到更大的护理障碍，更高的社会心理压力率以及较低的障碍 健康素养水平。这表明社会心理因素和SDOH可能会使非裔美国人患者 结果的风险要高得多。在这项研究中，我们将：1）描述关键的社会心理因素和 SDOH影响及时诊断，与健康相关的生活质量以及IBD患者的疾病结局 专注于非裔美国青少年和成年人； 2）利用定性方法来识别关键障碍和 对健康素养敏感的护理的促进者，包括及时诊断和有效管理IBD 具有非裔美国人青少年和成年人的IBD患者； 3）提高意识和教育 医生更有可能诊断和有效管理这些患者的计划，并为患者 和护理人员增加他们的健康信心，并更加参与他们的医疗保健决策， 同时满足健康素养需求。这项工作的结果将为解决 在非洲裔美国人和IBD的早期和适当定时的诊断和管理方 建立有效的意识和教育计划，可以在全国范围内实施。