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

项目总结/摘要 儿童癌症幸存者需要终身医疗保健来改善生活质量和健康。但 大多数儿童癌症的成年幸存者，包括那些有公共健康保险的人（主要是 医疗补助，缺乏长期的医疗保健。我们目前对性别差异的理解存在重大差距， 患者护理以及造成儿童癌症护理差异并使其永久化的可改变因素 医疗补助系统中的幸存者。本研究将采用质性研究和问卷调查相结合的研究方法， 评估幸存者在医疗补助系统中的护理经验，并确定影响护理的差异来源 儿童癌症成年幸存者的经验。我们期待联系潜在的招聘， 共有2,700名成年幸存者从儿童癌症幸存者研究（CCSS）获得医疗补助， 包括：20名幸存者进行定性幸存者访谈（目标1），其中8名幸存者将参加一个 德尔菲小组（目标2）; 144名幸存者进行试点调查（目标2）; 2 536名幸存者进行扩大调查（目标 3）。对于目标1，我们还将包括10名利益相关者参与者（护理提供者和财务导航员）， CCSS参与机构进行定性利益相关者访谈。具体目标如下。目标1： 使用定性方法探索儿童期成年幸存者获得优质医疗保健的多层次障碍 癌症在医疗体系中目标2：制定和验证一项调查，以量化幸存者的经历， 医疗补助制度。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， 社区和州一级的特征。本研究的重点与NIMHD的研究优先事项一致， 了解并减少种族/民族、社会经济地位、农村和性别之间的健康差距。数据 从这项研究中获得的信息将为R 01提出调查特定州癌症幸存者的建议奠定基础 队列，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。 医疗补助计划规则。候选人的长期职业目标是成为独立的科学家， 研究计划的重点是解决儿童癌症后健康和医疗保健方面的差距。下 健康差距/少数民族健康和癌症生存方面的国际专家的指导，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)掌握定性和调查研究技能，3）了解儿科肿瘤患者的经验， 癌症生存率，以及4）提高研究领导和管理技能，以完成过渡， 独立综合培训计划包括教学课程、动手学习活动和 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 完全独立的调查员

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.