Racial Disparities in Multiple Sclerosis: Quality of Care and Patient Experiences

多发性硬化症的种族差异：护理质量和患者体验

• 批准号: 10678691
• 负责人: Jagriti Jackie Bhattarai
• 金额: $ 27.01万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-23 至 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10678691
• 关键词: Address; Adherence; Affect; Area; Biometry; Black Populations; Brain; Caring; Cognition; Collaborations; Communication; Data; Data Collection; Decision Making; Dedications; Development; Disease; Disease Outcome; Disparate; Disparity; Documentation; Environment; Epidemiology; Focus Groups; Frequencies; Future; Goals; Health Care Costs; Health Psychology; Health system; Image; Incidence; Inequity; International; Intervention; Interview; Knowledge; Lesion; Literature; Measures; Medical; Mentored Patient-Oriented Research Career Development Award; Mentorship; Methods; Mission; Monitor; Multiple Sclerosis; National Institute on Minority Health and Health Disparities; Neurologic; Neurological outcome; Neurologist; Not Hispanic or Latino; Optic Nerve; Oral; Outcome; Patient Care; Patients; Population; Positioning Attribute; Process; Provider; Public Health Schools; Quality of Care; Questionnaires; Race; Recommendation; Reporting; Research; Research Activity; Research Methodology; Research Personnel; Resources; Site; Sleep; Specialist; Spinal Cord; Training; United States National Institutes of Health; Universities; Visit; Washington; Writing; advanced disease; burden of illness; career; career development; cohort; compliance behavior; design; disability; disparity reduction; early experience; experience; follow-up; health care disparity; health care quality; health disparity; health equity; improve minority health; improved outcome; innovation; medical schools; medication safety; mood symptom; mortality; nervous system disorder; patient engagement; patient health information; patient oriented; patient population; patient-clinician communication; poor health outcome; precision medicine; prospective; provider behavior; racial difference; racial disparity; racial health disparity; racial population; reduce symptoms; research and development; satisfaction; shared decision making; skills

PROJECT SUMMARY/ABSTRACT The proposed K23 award include one of the first comprehensive, mixed method studies of racial disparities in medical care for non-Hispanic blacks (NHBs) and non-Hispanic whites (NHWs) with multiple sclerosis (MS) and will provide the necessary support for Dr. Bhattarai, an early stage investigator, to obtain mentorship and training to reach her LONG-TERM GOAL of becoming an independent researcher and leading expert in understanding and addressing racial disparities in MS. There is a great need for additional researchers like Dr. Bhattarai who are dedicated to this line of research considering that NHBs fare markedly worse outcomes than NHWs and recent studies have shown a higher incidence of MS in NHBs compared to NHWs. Although MS has long been considered to be a disease that largely affects NHWs, findings such as these are worrisome because less than 1% of the MS literature has focused on NHBs. Racial disparities in healthcare are pervasive and research on other patient populations reveals disparities that arise from lower quality of care. The proposed project will involve medical chart reviews of prospectively collected patient data at two leading MS Centers in the US to quantify disparities in (AIM 1) quality of health care of NHBs and NHWs and (AIM 2) patient adherence to recommended plan of MS care in NHBs and NHWs. A convergent parallel mixed method, cross-sectional design will be employed to better understand patient perspectives on the critical aspects of MS care for AIM 3, which will involve data collection using established quantitative measures of patient experience and satisfaction with MS care, in- depth patient interviews, and focus groups stratified by race. We expect this research to advance the current state of research on MS by delivering high-quality data on racial disparities in MS care, which will provide the rationale for future R01 proposals that will focus on the development of innovative solutions to address the inequities in the MS population. The proposed career development and research plan directly address the mission of the NIMHD: "to reduce disparities and improve minority health" and the NIH's initiative on workforce diversity. Dr. Bhattarai will leverage the unparalleled resources at the Johns Hopkins School of Medicine and the Bloomberg School of Public Health to meet her career development goals to: (1) attain advanced training in epidemiological, biostatistical, and mixed research methods; (2) develop expertise in understanding and addressing health disparities in the MS population; and (3) enhance scientific writing, oral presentation, and collaboration skills. Dr. Bhattarai has strategically assembled an exemplary mentorship team of Drs. Ellen Mowry, Lisa Cooper, and Mary Catherine Beach—world renowned experts in the areas of MS, racial health disparities, and patient-provider communication—and a carefully-selected training plan of research activities, didactics, formal coursework, and scientific engagements. These factors, joined with the first-class training environment at Johns Hopkins, make Dr. Bhattarai an ideal candidate who is well-positioned to succeed.

项目总结/摘要 拟议中的K23奖包括第一个全面的，混合方法的种族差异研究， 为患有多发性硬化症（MS）的非西班牙裔黑人（NHB）和非西班牙裔白人（NHW）提供医疗护理， 将为早期研究人员巴特拉伊博士提供必要的支持，以获得指导和培训 为了实现她的长期目标，成为一个独立的研究人员和领先的专家，在理解 并解决MS的种族差异。非常需要像Bhattarai博士这样的研究人员， 致力于这方面的研究，考虑到NHB的结局明显比NHWs差， 最近的研究表明，与NHW相比，NHB中MS的发病率更高。虽然MS长期以来 被认为是一种主要影响NHWs的疾病，诸如此类的发现令人担忧，因为 1%的MS文献关注NHB。医疗保健中的种族差异很普遍， 其他患者群体显示出因护理质量较低而产生的差异。拟议项目将涉及 对美国两家领先的MS中心前瞻性收集的患者数据进行医学图表审查， （目的1）NHB和NHWs的医疗保健质量和（目的2）患者对推荐的 NHB和NHWs中的MS护理计划。一种收敛的并行混合方法，横截面设计将 用于更好地了解患者对AIM 3 MS护理关键方面的看法，这将涉及 使用已建立的患者体验和对MS护理满意度的定量指标收集数据， 深度病人访谈，以及按种族分层的焦点小组。我们希望这项研究能够推动目前的 通过提供关于MS护理中种族差异的高质量数据， 未来R 01提案的基本原理，这些提案将侧重于开发创新解决方案，以解决 多发性硬化症人群中的不平等。拟议的职业发展和研究计划直接针对 NIMHD的使命：“减少差距，改善少数群体健康”和NIH关于劳动力的倡议 多样性巴特拉伊博士将利用约翰霍普金斯医学院和 布隆伯格公共卫生学院，以满足她的职业发展目标：（1）获得高级培训， 流行病学，生物统计学和混合研究方法;（2）发展了解和 解决MS人群的健康差异;（3）加强科学写作，口头陈述， 协作技能。巴特拉伊博士战略性地组建了一个由艾伦博士 Mowry、丽莎库珀和玛丽凯瑟琳比奇--多发性硬化症、种族健康等领域的世界知名专家 差异，患者-提供者沟通-以及精心选择的研究活动培训计划， 教学法、正式课程和科学约定。这些因素，加上一流的培训， 约翰霍普金斯大学的环境，使巴塔拉伊博士成为一个理想的候选人谁是处于有利地位的成功。

项目成果

Healthcare Leadership Perspectives on Supporting Frontline Workers in Health Center Settings during the Pandemic.

• DOI: 10.3390/ijerph19063310
• 发表时间: 2022-03-11
• 期刊: International journal of environmental research and public health
• 作者: Alvarez C;Sims H;Grant K;Walczak J;Lipman PD;Marsteller JA;Cooper LA;On Behalf Of Rich Life Project Investigators
• 通讯作者: On Behalf Of Rich Life Project Investigators