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

摘要- P01，AYA癌症幸存者的临床护理差距和未满足的需求 这个研究项目的重点是癌症护理和结果的人诊断为癌症 在青少年和青年（AYA）年龄范围内，从15岁到39岁。临床护理和长期- 尽管这一人群有其独特的需求，但对他们的长期监测研究不足。不像年轻的 和老年人口，在AYA年龄范围内的个人经历了重大的生活转变， 从童年回家和求职或接受高等教育，到建立事业和家庭。一 在这些生命转变的背景下，癌症诊断提出了独特或特别的挑战， 急性。在医疗保健方面，AYA可能缺乏连续性的照顾，因为他们从儿科或 从青少年专家到成人专家生育保留策略是癌症患者所独有的 被诊断为AYA，因为推荐的选择只有在青春期后和生育年龄才可用。 由于许多AYA处于职业生涯的早期阶段，财务问题因癌症而加剧 诊断及其治疗和护理可能分散在不同的提供者之间。因此，对于AYA， 癌症和其他疾病的护理协调可能是次优的，影响癌症的晚期效应。 或其治疗，并忽视了AYA癌症幸存者的关注。我们提出了三个项目， 沿着癌症护理的连续性，以提高我们对AYA癌症幸存者的最佳护理的知识。 项目1的重点是生育问题和生殖保健服务的利用及其对癌症的影响 治疗项目2的重点是从积极的癌症治疗到监测和辅助治疗的护理过渡 在诊断后2至5年内提供服务。项目3记录医疗条件和后期影响 发生在AYA癌症幸存者中，并确定了影响这些发展可能性的因素。 条件每个项目的目的是确定其重点领域的最佳护理方法， 更好地满足患者需求。这些项目由三个核心支助，一个行政支助， 核心，生物统计和数据协调共享资源，以及调查共享资源。人口 本P01中的数据资源包括：北卡罗来纳州大学癌症信息与人口 健康资源与国家癌症登记处链接到健康索赔;加州癌症登记处链接到 全州范围内的住院、急诊和门诊手术数据;犹他州人口数据库 数据与来自加州的数据相似;以及Kaiser Permanente北方的综合医疗机构 和南加州。这些数据提供了机会，以检查从多个提供者在不同的护理 环境，并将通过对5,000名AYA癌症患者的调查加以补充，包括患者的观点， 我们致力于我们的研究目标。多学科的合作研究小组包括流行病学家， 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癌症幸存者。这 研究将推进知识，以改善AYA癌症患者和幸存者的护理和结果。

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.