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

• 批准号: 10658891
• 负责人: Jessica Chubak
• 金额: $ 116.71万
• 依托单位: KAISER FOUNDATION RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2026-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10658891
• 关键词: Accident and Emergency department; Acute; Address; Adolescent; Adolescent and Young Adult; Adolescent and young adult cancer patients; 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; Disparity; 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; Outcome; Outpatients; Patient Preferences; Patient-Centered Care; Patients; Persons; Phase; Population; Population Database; Population Surveillance; Preservation Technique; Provider; Puberty; Race; Recommendation; Reporting; Reproductive Health Services; Research; Research Personnel; Research Project Grants; Resource Sharing; Respiratory Disease; Risk; Second Primary Cancers; Services; Socioeconomic Status; Specialist; Surveys; Survivors; United States; Universities; University resources; Utah; Visit; aged; barrier to care; cancer care; cancer diagnosis; cancer therapy; cancer type; care coordination; 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

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癌症幸存者的临床护理差距和未满足的需求 这项研究计划的重点是癌症护理和诊断为癌症患者的结果。 在青少年和青壮年(Aya)年龄范围内，从15岁到39岁不等。临床护理和长期- 对这一群体的长期监测研究不足，尽管他们有独特的需求。与杨格不同 而老年人，在Aya年龄范围内的个人经历了重大的人生转变，从搬出 从儿时的家和寻求就业或高等教育，到建立事业和家庭。一个 这些生命转变背景下的癌症诊断提出了独特的或特别的挑战 急性期。在医疗保健方面，AYA在从儿科或非儿科过渡时可能缺乏连续性护理 从青少年专家到成人专家。保留生育能力的策略是癌症患者独有的 被诊断为AYA，因为建议的选择只有在青春期后和育龄阶段才可用。 由于许多AYA正处于职业生涯的早期阶段，对财务的担忧因癌症而加剧 诊断及其治疗和护理可能在不同的提供者之间分散。因此，对于AYAS来说， 癌症和其他疾病的护理协调可能不是最理想的，这会影响癌症的后期效应 或者它的治疗，而忽视了Aya癌症幸存者的担忧。我们提出了三个项目，保持一致 沿着癌症护理连续体，提高我们对Aya癌症幸存者最佳护理的知识。 项目1侧重于生育问题和生殖健康服务的使用及其对癌症的影响 治疗。项目2侧重于从积极的癌症治疗到监测和辅助治疗的护理过渡 在确诊后的2至5年内提供服务。项目3记录医疗状况和后遗症 并确定了影响发生这些疾病的可能性的因素 条件。每个项目都旨在确定其重点领域内的最佳护理方法，以改进 结果，并更好地满足患者需求。这些项目由三个核心支持，一个管理 CORE，生物统计和数据协调共享资源，以及调查共享资源。人口 P01中的数据资源包括：北卡罗来纳大学癌症信息与人口 与健康声明链接的州癌症注册的健康资源；加州癌症注册链接到 全州住院、急诊科和门诊手术数据；犹他州人口数据库 与加利福尼亚州的数据相似；以及Kaiser Permanente Northern的综合医疗保健设置 和南加州。这些数据提供了检查来自多个不同提供者的护理的机会 此外，还将对5,000名Aya癌症患者进行调查，将患者的观点包括在内 我们致力于我们的研究目标。这个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癌症幸存者。这 研究将促进知识的进步，以改善Aya癌症患者和幸存者的护理和预后。

项目成果

Challenges and Opportunities of Epidemiological Studies to Reduce the Burden of Cancers in Young Adults.

减少年轻人癌症负担的流行病学研究的挑战和机遇。

• DOI: 10.1007/s40471-022-00286-9
• 发表时间: 2023
• 期刊: Current epidemiology reports
• 影响因子: 3.3
• 作者: Nichols,HazelB;Wernli,KarenJ;Chawla,Neetu;O'Meara,EllenS;Gray,MarlaineFigueroa;Green,LauraE;Baggett,ChristopherD;Casperson,Mallory;Chao,Chun;Jones,SaleneMW;Kirchhoff,AnneC;Kuo,Tzy-Mey;Lee,Catherine;Malogolowkin,Marcio