Disparities in Quality Healthcare Among Childhood Cancer Survivors: Role of Medicaid

儿童癌症幸存者的医疗质量差异：医疗补助的作用

基本信息

批准号：
10722895
负责人：
Xu Ji
金额：
$ 13.11万
依托单位：
EMORY UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-07-21 至 2028-01-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10722895
关键词：
Address Adult Adverse effects Affect Affordable Care Act Age Automobile Driving Award COVID-19 pandemic Cancer Center Cancer Survivor Cancer Survivorship Caring Censuses Characteristics Childhood Childhood Cancer Survivor Study Chronic Chronic Disease Clinical Data Communities Cost Sharing Cross-Sectional Studies Data Detection Discrimination Disease Disparity Drops Early treatment Enrollment Ensure Equity Ethnic Origin Face Financial Hardship Foundations Future Goals Health Healthcare Impaired cognition Improve Access Individual Institution Insurance Insurance Coverage International Intervention Interview Knowledge Late Effects Lead Leadership Link Low income Malignant Childhood Neoplasm Malignant Neoplasms Measurable Measures Medicaid Mentorship Methods Modeling National Institute on Minority Health and Health Disparities Outcome Participant Patient Care Patients Pediatric Oncology Policies Population Qualitative Methods Quality of Care Quality of life Race Rare Diseases Recording of previous events Reduce health disparities Research Research Methodology Research Personnel Research Priority Role Scientist Services Societies Socioeconomic Status Source Structure Survey Methodology Surveys Survivors System Training Underserved Population United States Validation Work beneficiary cancer therapy care coordination care delivery care providers career childhood cancer survivor clinical care cohort design ethnic minority experience follow-up hands-on learning health care disparity health care quality health disparity health literacy high risk implementation science improved learning strategy low socioeconomic status medical specialties minority health multidisciplinary post-pandemic pre-pandemic programs public health insurance racial health disparity racial minority recruit rural disparities rural dwellers rurality satisfaction sex sex disparity skills sociodemographic group socioeconomics tool urban disparity voltage

项目摘要

PROJECT SUMMARY/ABSTRACT Survivors of childhood cancer require life-long healthcare to improve quality of life and health. However, the majority of adult survivors of childhood cancer, including those with public health insurance (primarily Medicaid), lack long-term healthcare. There are crucial gaps in our current understanding of disparities in patient care and the modifiable factors that create and perpetuate disparities in care among childhood cancer survivors in the Medicaid system. This study will use qualitative and survey research methods to systematically assess survivor experience of care in the Medicaid system and determine sources of disparities affecting care experience among adult survivors of childhood cancer. We anticipate contacting for potential recruitment a total of 2,700 adult survivors insured with Medicaid from the Childhood Cancer Survivor Study (CCSS), including: 20 survivors for qualitative survivor interviews (Aim 1), among whom 8 survivors will participate in a Delphi panel (Aim 2); 144 survivors for a pilot survey (Aim 2); and 2,536 survivors for an expanded survey (Aim 3). For Aim 1, we will also include 10 stakeholder participants (care providers and financial navigators) from CCSS participating institutions for qualitative stakeholder interviews. The specific aims are as follows. Aim 1: Use qualitative methods to explore multi-level barriers to quality healthcare for adult survivors of childhood cancer in the Medicaid system. Aim 2: Develop and validate a survey to quantify survivor experiences with the Medicaid system. Aim 3: Assess racial/ethnic, socioeconomic, rural-urban, and sex disparities in survivor experiences with insurance and healthcare in Medicaid, and how disparities are related to survivor-, community-, and state-level characteristics. The focus of this study aligns with the NIMHD’s research priority to understand and reduce health disparities by race/ethnicity, socioeconomic status, rurality, and sex. Data gained from this study will form the foundation for an R01 proposal to survey state-specific cancer survivor cohorts, with the goal of informing interventions that promote equitable, high-quality care based on state Medicaid program rules. The candidate’s long-term career goal is to become an independent scientist with a research program focused on addressing disparities in health and healthcare after childhood cancer. Under the mentorship of international experts in health disparities/minority health and cancer survivorship, the candidate will accomplish her short-term goals to 1) develop expertise in health disparities and implementation science, 2) acquire qualitative and survey research skills, 3) understand patient experience in pediatric oncology and cancer survivorship, and 4) improve research leadership and management skills to complete transition to independence. The integrated training plan includes a mix of didactic courses, hands-on learning activities, and focused multidisciplinary mentorship that will advance the candidate’s research skills and ensure her transition to a fully independent investigator.

项目概要/摘要儿童癌症幸存者需要终身医疗保健以改善生活质量和健康。大多数儿童癌症成年幸存者，包括那些拥有公共健康保险的人（主要是医疗补助），缺乏长期医疗保健，我们目前对差异的理解存在重大差距。患者护理以及造成和延续儿童癌症护理差异的可改变因素这项研究将使用定性和调查研究方法来系统地研究医疗补助系统中的幸存者。评估幸存者在医疗补助系统中的护理体验并确定影响护理的差异来源我们预计会联系潜在的招募对象。共有 2,700 名成年幸存者通过儿童癌症幸存者研究 (CCSS) 获得了医疗补助，其中： 20 名幸存者进行定性幸存者访谈（目标 1），其中 8 名幸存者将参加德尔福小组（目标 2）；试点调查 144 名幸存者（目标 2）；扩大调查 2,536 名幸存者； 3) 对于目标 1，我们还将包括来自以下国家的 10 名利益相关者参与者（护理提供者和财务导航者）。 CCSS 参与机构进行定性利益相关者访谈的具体目标如下：使用定性方法探索成年童年幸存者获得优质医疗保健的多层次障碍目标 2：制定并验证一项调查，以量化幸存者的经历。目标 3：评估幸存者的种族/民族、社会经济、城乡和性别差异。医疗补助中的保险和医疗保健经验，以及差异如何与幸存者相关，本研究的重点与 NIMHD 的研究重点一致。了解并减少种族/民族、社会经济地位、农村和性别数据的健康差异。这项研究的成果将构成 R01 提案的基础，以调查特定州的癌症幸存者队列，其目标是为促进基于国家的公平、高质量护理的干预措施提供信息医疗补助计划规定，候选人的长期职业目标是成为一名独立科学家。研究计划的重点是解决儿童癌症后的健康和医疗保健方面的差异。健康差异/少数族裔健康和癌症生存方面国际专家的指导，候选人将实现她的短期目标：1）发展健康差异和实施科学方面的专业知识， 2) 获得定性和调查研究技能，3) 了解儿科肿瘤学的患者体验，以及癌症存活率，以及 4) 提高研究领导和管理技能，以完成向综合培训计划包括教学课程、实践学习活动和集中的多学科指导将提高候选人的研究技能并确保她的过渡交给完全独立的调查员。