Clinical Care Gaps and Unmet Needs in Adolescent and Young Adult (AYA) Cancers

青少年和年轻人 (AYA) 癌症的临床护理差距和未满足的需求

基本信息

批准号：
10477003
负责人：
Jessica Chubak
金额：
$ 169.61万
依托单位：
KAISER FOUNDATION RESEARCH INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-09-15 至 2025-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10477003
关键词：
Accident and Emergency department Acute Address Adolescent Adolescent and Young Adult Adult Advocate Aftercare Age Ambulatory Surgical Procedures Area Biometry Breast California Cancer Patient Cancer Survivor Cardiovascular Diseases Caring Child Childhood Chronic Colorectal Complement Continuity of Patient Care Counseling Data Diagnosis Elderly Emergency department visit Employment Endocrine System Diseases Epidemiologist Ethnic Origin Face Family Fertility Financial Hardship Goals Guidelines Health Health Insurance Health Resources Health Services Health system Healthcare Home Hospitalization Incidence Individual Inpatients Insurance Insurance Coverage Interdisciplinary Study Kidney Diseases Knowledge Late Effects Life Link Liver diseases Lymphoma Malignant Neoplasms Malignant neoplasm of testis Medical National Cancer Institute National Comprehensive Cancer Network Neighborhoods North Carolina Older Population Oncologist Outpatients Patient Preferences Patient-Centered Care Patient-Focused Outcomes Patients Persons Phase Population Population Database Population Surveillance Preservation Technique Provider Puberty Race Reporting Reproductive Health Services Research Research Personnel Research Project Grants Resource Sharing Respiratory Disease Risk Second Primary Cancers Services Socioeconomic Status Specialist Surveys United States Universities University resources Utah Visit aged barrier to care cancer care cancer diagnosis cancer therapy cancer type care coordination care outcomes care preference career child bearing clinical care data harmonization data resource evidence base experience fertility preservation follow-up health care service utilization health care settings higher education improved improved outcome interest multidisciplinary neglect neoplasm registry population health preservation programs survivorship

项目摘要

ABSTRACT – P01, Clinical Care Gaps and Unmet Needs in AYA Cancer Survivors This program of research focuses on cancer care and outcomes for people diagnosed with cancer during the adolescent and young adult (AYA) age range, from 15 to 39 years old. The clinical care and long- term surveillance of this population of individuals are understudied despite their unique needs. Unlike younger and older populations, individuals in the AYA age range go through major life transitions, from moving out of the childhood home and seeking employment or higher education, to establishing a career and family. A cancer diagnosis in the context of these life transitions presents challenges that are unique or particularly acute. In the healthcare context, AYAs may lack of continuity of care as they transition from pediatric or adolescent specialists to adult specialists. Fertility preservation strategies are unique to cancer patients diagnosed as AYAs, as recommended options are available only after puberty and through child-bearing age. As many AYAs are at the early stages of their careers, financial concerns are exacerbated with a cancer diagnosis and its treatment, and care may be fragmented across varying providers. Thus, for AYAs, coordination of care for cancer and other conditions may be suboptimal, influencing late effects of the cancer or its treatment, and neglecting the concerns of AYA cancer survivors. We propose three projects, aligned along the cancer care continuum, to improve our knowledge about the best care for AYA cancer survivors. Project 1 focuses on fertility concerns and use of reproductive health services and their impact on cancer treatment. Project 2 focuses on care transitions from active cancer treatment to surveillance and ancillary services in the period 2 to 5 years after diagnosis. Project 3 documents medical conditions and late effects that occur in AYA cancer survivors and identifies factors that influence likelihood of developing these conditions. Each project aims to determine the best approaches to care in their area of focus, to improve outcomes and better address patient needs. These projects are supported by three cores, an Administrative Core, a Biostatistics and Data Harmonization Shared Resource, and a Survey Shared Resource. Population and data resources in this P01 include: the University of North Carolina Cancer Information & Population Health Resource with a state cancer registry linked to health claims; the California Cancer Registry linked to statewide hospitalization, emergency department, and ambulatory surgery data; the Utah Population Database with data similar to that from California; and the integrated healthcare settings of Kaiser Permanente Northern and Southern California. These data provide the opportunity to examine care from multiple providers in varied settings and will be complemented by a survey of 5,000 AYA cancer patients to include patient perspectives as we address our research goals. The multidisciplinary, collaborative research team includes epidemiologists, health services researchers, biostatisticians, pediatric and adult oncologists, and AYA cancer survivors. This research will advance knowledge to improve the care and outcomes of AYA cancer patients and survivors.

摘要 - P01，AYA癌症幸存者中的临床护理差距和未满足的需求该研究计划着重于诊断患有癌症的人的癌症护理和结果在青少年和年轻人（AYA）年龄范围内，年龄为15至39岁。临床护理和长期尽管有独特的需求，但对这一个人人群进行了定期监视。不像年轻和年龄较大的人群，AYA年龄范围内的个人经历了重大的生活转变，从童年时代的住所并寻求员工或高等教育，以建立职业和家庭。一个在这些生命过渡的背景下的癌症诊断提出了独特或尤其是尤其是急性。在医疗保健背景下，AYA从小儿过渡或成人专家的青少年专家。生育保存策略是癌症患者独有的被诊断为AYA，作为推荐的选择，仅在青春期和生育年龄后才获得。由于许多AYA处于职业生涯的早期阶段，因此财务问题因癌症而加剧诊断及其治疗和护理可能会在不同的提供者中分散。对于Ayas来说，对癌症和其他疾病的护理协调可能是最佳的，会影响癌症的后期作用或它的治疗方法，忽略了AYA癌症存活的关注。我们提出了三个项目，沿着癌症护理继续，以提高我们对AYA癌症生存最佳护理的了解。项目1专注于生育问题和使用复制性卫生服务及其对癌症的影响治疗。项目2专注于从主动癌症治疗到监视和辅助的护理过渡诊断后2至5年的服务。项目3记录医疗状况和延迟影响这发生在AYA癌症存活中，并确定影响开发这些可能性的因素状况。每个项目旨在确定关注领域的最佳护理方法，以改善结果并更好地满足患者需求。这些项目得到了三个核心的支持，一个行政核心，生物统计学和数据协调共享资源以及调查共享资源。人口该P01中的数据资源包括：北卡罗来纳大学癌症信息与人口与健康主张有关的州癌注册表的卫生资源；加利福尼亚癌症登记处与全州住院，急诊科和门诊手术数据；犹他州人口数据库与加利福尼亚类似的数据；以及Kaiser Permanente Northern的综合医疗机构和南加州。这些数据提供了检查多个提供商的护理的机会设置，将通过对5,000名AYA癌症患者的调查完成，以包括患者的观点为我们解决我们的研究目标。多学科的合作研究团队包括流行病学家，卫生服务研究人员，生物统计学家，儿科和成人肿瘤学家以及AYA癌症的生存。这研究将提高知识，以改善AYA癌症患者和幸存者的护理和结果。