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: 9806118
• 负责人: Jagriti Jackie Bhattarai
• 金额: $ 19.23万
• 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 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9806118
• 关键词: Address; Adherence; Affect; Area; Behavior; Biometry; Brain; Caring; Cognition; Collaborations; Communication; Data; Data Collection; Data Quality; Decision Making; Development; Disease; Disease Outcome; Documentation; Environment; Epidemiology; Focus Groups; Frequencies; Future; Goals; Health; Health Care Costs; Health Psychology; Health system; Image; Incidence; International; Intervention; Interview; Knowledge; Lesion; Literature; Measures; Medical; Medical Records; Mentored Patient-Oriented Research Career Development Award; Mentorship; Methods; Mission; Monitor; Multiple Sclerosis; Neurologic; Neurological outcome; Neurologist; Not Hispanic or Latino; Optic Nerve; Oral; Outcome; Patient Care; Patient-Focused Outcomes; 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; base; 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; improved; improved outcome; innovation; medical schools; medication safety; minority health; mood symptom; mortality; nervous system disorder; patient engagement; patient oriented; patient population; patient-clinician communication; precision medicine; prospective; racial difference; racial disparity; racial health disparity; 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.

项目摘要/摘要 拟议的K23奖包括第一批对#年种族差异进行全面、混合方法研究的之一 非西班牙裔黑人(NHBs)和患有多发性硬化症(MS)的非西班牙裔白人(NHW)的医疗保健 将为早期研究人员Bhattarai博士提供必要的支持，以获得指导和培训 实现她的长期目标，成为一名独立的研究人员和理解方面的领先专家 解决马萨诸塞州的种族差异问题，非常需要像巴塔拉伊博士这样的研究人员 致力于这方面的研究，考虑到NHBs的结果明显比NHW和 最近的研究表明，与NHW相比，NHBs中MS的发生率更高。尽管多发性硬化症长期以来一直是 被认为是一种主要影响卫生工作者的疾病，这样的发现令人担忧，因为不到 1%的多发性硬化症文献关注的是NHBs。医疗保健中的种族差异无处不在，研究 其他患者群体显示出由于较低的护理质量而产生的差异。拟议的项目将涉及 对美国两个领先的MS中心前瞻性收集的患者数据进行病历审查，以量化 (目标1)NHBs和NHW的医疗质量差异和(AIM 2)患者对建议的依从性 NHBs和NHW中的MS护理计划。一种收敛的并行混合方法，将截面设计 被用来更好地理解患者对AIM 3的MS护理的关键方面的观点，这将涉及 使用已建立的患者体验和对MS护理的满意度的量化测量收集数据，在 深入的患者访谈，以及按种族分层的焦点小组。我们期待这项研究将推动当前的 通过提供关于多发性硬化症治疗中种族差异的高质量数据，对多发性硬化症的研究状况，这将提供 未来R01提案的基本原理将侧重于开发创新的解决方案，以解决 多发性硬化症人群中的不平等现象。拟议的职业发展和研究计划直接针对 NIMHD的使命：“缩小差距和改善少数群体健康”和NIH关于劳动力的倡议 多样性。Bhattarai博士将利用约翰霍普金斯医学院无与伦比的资源和 彭博公共卫生学院将实现她的职业发展目标：(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 解决多发性硬化症人群中的健康差距；以及(3)加强科学写作、口头陈述和 协作技能。Bhattarai博士战略性地组建了一支Ellen博士的模范指导团队 莫瑞、丽莎·库珀和玛丽·凯瑟琳·比奇--多发性硬化症、种族健康领域的世界知名专家 差异、患者与提供者的沟通--以及精心挑选的研究活动培训计划， 教学、正式的课程作业和科学活动。这些因素，加上一流的训练 约翰斯·霍普金斯大学的环境，使巴塔莱博士成为一名有条件取得成功的理想人选。