Assessment of social needs and survivorship care experiences among adolescent and young adult (AYA) cancer survivors, families, and the healthcare team

评估青少年和年轻人 (AYA) 癌症幸存者、家庭和医疗团队的社会需求和幸存者护理经验

• 批准号: 10673888
• 负责人: Carol Ochoa-Dominguez
• 金额: $ 9.1万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN DIEGO
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-21 至 2026-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10673888
• 关键词: Acculturation; Address; Adolescent and Young Adult; Adolescent and young adult cancer patients; Adult; Affect; Aftercare; Applied Skills; Area; Award; Cancer Control; Cancer Survivor; Cancer Survivorship; Caregivers; Caring; Child; Child Mental Health; Childhood; Chronic; Communication; Communities; Data Analyses; Decision Making; Disparity; Elderly; Emotional; Family; Funding; Goals; Health; Healthcare Systems; High-Risk Cancer; Hispanic; Immigration; Impaired health; Impairment; Individual; Intervention Studies; Interview; Knowledge; Late Effects; Latino; Latino Population; Learning Skill; Linguistics; Literature; Long Term Survivorship; Long-Term Care; Long-Term Effects; Los Angeles; Malignant Childhood Neoplasm; Malignant Neoplasms; Managed Care; Medical; Medical Care Team; Mental Health; Mentors; Minority; Not Hispanic or Latino; Outcome; Parents; Phase; Pilot Projects; Play; Policies; Population; Population Heterogeneity; Populations at Risk; Positioning Attribute; Postdoctoral Fellow; Process; Provider; Psyche structure; Qualitative Research; Quality of life; Recommendation; Registries; Religiosity; Research; Research Design; Risk; Sampling; Social support; Spirituality; Spouse Caregiver; Stress; Surveillance Program; Survivors; Time; Training; Underserved Population; Uninsured; United States; Universities; Well in self; Work; adverse outcome; cancer care; cancer health disparity; cancer prevention; care giving burden; caregiving; childhood cancer mortality; childhood cancer survivor; comorbidity; depressive symptoms; ethnic diversity; ethnic minority; ethnic minority population; experience; family influence; follow-up; health disparity; health equity; health management; health related quality of life; high risk; improved; improved outcome; interest; marginalized population; parental role; population based; population health; primary caregiver; psychological distress; psychosocial; psychosocial adjustment; racial minority; recruit; rural dwellers; skills; social; socioeconomics; survivorship; training opportunity; young adult

ABSTRACT It is projected that there will be more than 500,000 childhood cancer survivors (CCS) living in the United States by 2020. Despite advances in treatment, the majority of CCS will experience a chronic or severe condition as a result of their treatment known as a “late effect. There is substantial evidence about the long-term effects of psychological distress, impaired health-related quality of life (HRQoL), and late mortality for CCS. Despite these serious and long-term health challenges, engagement with recommended survivorship care declines over time in this at-risk population. Throughout treatment and into long-term survivorship, parents of CCS are highly involved with medical care and play a role in helping CCS transition from pediatric to adult-focused survivorship care. Emerging studies suggest that parent’s psychological distress is related to poorer CCS HRQoL, and that Hispanic/Latino CCS may be at higher risk for such adverse outcomes. These studies suggest that there may be contextual and cultural factors that influence outcomes for Hispanic/Latino families, such as acculturation, immigration status, and linguistic aspects. Given the documented impact of treatment on adverse outcomes such as comorbid conditions and care engagement, and the key caregiving role that parents play for CCS, examining the relationships between parents, CCS, and medical providers is critical to identify ways to improve long-term care engagement for young adult CCS, particularly those at high risk for poorer outcomes such as ethnic minorities. The premise of the proposed research is that multi-level factors contribute to disparities in HRQoL and survivorship care among diverse populations of adult CCS. During my dissertation research (F99 phase), I focus on how survivor-caregiver dyads manage cancer, share appraisal, and how collaborative management of cancer optimizes both parent and child mental health among an ethnically diverse population with a focus on Hispanic/Latino families. During the K00 phase, I will extend this research and training by developing expertise in understanding healthcare system and policy-level factors that contribute to disparities in cancer survivorship. Results from this proposal will yield important information about how individual, interpersonal, cultural, and healthcare system factors impact medical decision-making and psychosocial health among an understudied and high-risk cancer population. The proposed F99/K00 proposal is also a priority area of scientific research under the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act and is aligned with current NCI funding for intervention research to support pediatric and adolescent and young adult cancer survivor and caregivers. Ultimately, completing this integrated training will allow me to apply the skills learned at a research-intensive university, where I am at the forefront of research to build healthier communities, and develop new ways to address challenging cancer-related health problems, especially among historically marginalized and underserved populations.

抽象的 预计将有超过 500,000 名儿童癌症幸存者 (CCS) 生活在美国 到 2020 年。尽管治疗取得了进展，但大多数 CCS 仍将经历慢性或严重的病症 他们的治疗结果被称为“迟发效应”。有大量证据表明， CCS 导致心理困扰、健康相关生活质量 (HRQoL) 受损和晚期死亡率。尽管 这些严重和长期的健康挑战，对建议的幸存者护理的参与度下降 随着时间的推移，这个高危人群。在整个治疗和长期生存过程中，CCS 的父母 高度参与医疗保健，并在帮助 CCS 从儿科向成人转型方面发挥作用 幸存者护理。最新研究表明，父母的心理困扰与 CCS 较差有关 HRQoL，并且西班牙裔/拉丁裔 CCS 可能面临此类不良结果的更高风险。这些研究 表明可能存在影响西班牙裔/拉丁裔家庭结果的背景和文化因素， 例如文化适应、移民身份和语言方面。鉴于有记录的治疗影响 不良后果，例如共病状况和护理参与度，以及关键的护理角色 家长为 CCS 效力，检查家长、CCS 和医疗提供者之间的关系对于 找出提高 CCS 年轻人长期护理参与度的方法，特别是那些处于 CCS 高风险的人 少数族裔等结果较差。本研究的前提是多层次因素 导致不同成人 CCS 人群之间 HRQoL 和生存护理方面的差异。在我的 论文研究（F99 阶段），我专注于幸存者-照顾者二人组如何管理癌症，分享评估， 以及癌症的协作管理如何优化父母和孩子的心理健康 种族多样化的人口，重点是西班牙裔/拉丁裔家庭。在K00阶段，我会延长这个 通过发展了解医疗保健系统和政策层面因素的专业知识来进行研究和培训 造成癌症生存率的差异。该提案的结果将产生以下重要信息： 个人、人际、文化和医疗保健系统因素如何影响医疗决策和 未充分研究的高风险癌症人群的心理社会健康。拟议的F99/K00提案 也是儿童癌症生存、治疗、获取和治疗项目下科学研究的优先领域 研究 (STAR) 法案，与当前 NCI 资助的干预研究保持一致，以支持儿科和 青少年和年轻成人癌症幸存者和护理人员。最终，完成这种综合培训将 让我能够运用在研究密集型大学学到的技能，我在那里处于研究的前沿 建立更健康的社区，并开发新方法来解决具有挑战性的癌症相关健康问题， 特别是在历史上被边缘化和服务不足的人群中。