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 该研究计划的重点是癌症护理和诊断癌症患者的结果 在青少年和青年 (AYA) 年龄范围内，从 15 岁到 39 岁，进行临床护理和长期护理。 尽管与年轻人不同，但对这一人群的长期监测尚未得到充分研究。 和老年人群中，AYA 年龄范围内的个体经历了重大的生活转变，从搬出 童年家庭并寻求就业或高等教育，建立事业和家庭 A。 在这些生命转变的背景下进行癌症诊断提出了独特或特别的挑战 在医疗保健方面，AYA 在从儿科或儿科过渡时可能缺乏连续性护理。 从青少年专家到成年专家 生育力保存策略对于癌症患者来说是独特的。 诊断为 AYA，因为推荐的选择仅在青春期后和育龄期可用。 由于许多 AYA 处于职业生涯的早期阶段，癌症加剧了财务问题 诊断及其治疗和护理可能分散在不同的提供者中，因此，对于 AYA 来说， 癌症和其他疾病的护理协调可能不理想，影响癌症的后期影响 或其治疗，并忽视 AYA 癌症幸存者的担忧，我们提出了三个项目。 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了解。 项目 1 重点关注生育问题和生殖健康服务的使用及其对癌症的影响 项目 2 侧重于从积极的癌症治疗到监测和辅助的护理转变。 项目 3 记录诊断后 2 至 5 年内的医疗状况和后期影响。 发生在 AYA 癌症幸存者中并确定影响发生这些癌症的可能性的因素 每个项目都旨在确定其重点领域的最佳护理方法，以改善情况。 这些项目由三个核心支持：行政管理。 核心，生物统计和数据协调共享资源，以及调查共享资源。 本 P01 中的数据资源包括：北卡罗来纳大学癌症信息与人口 与健康声明相关的州癌症登记处的健康资源； 住院、急诊和门诊手术数据；犹他州人口数据库； 数据与加利福尼亚州以及 Kaiser Permanente Northern 的综合医疗保健环境类似； 这些数据提供了检查不同地区多个提供者的护理的机会。 环境，并将通过对 5,000 名 AYA 癌症患者的调查来补充，以纳入患者的观点： 我们致力于实现我们的研究目标。多学科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。 研究将增进知识，改善 AYA 癌症患者和幸存者的护理和结果。

项目成果

Late venous thromboembolism in survivors of adolescent and young adult cancer: A population-based study in California.

青少年和年轻成人癌症幸存者的晚期静脉血栓栓塞：加利福尼亚州的一项基于人群的研究。

• 发表时间: 2024-03
• 影响因子: 7.5
• 作者: Abrahão, Renata;Brunson, Ann;Chubak, Jessica;Wernli, Karen J;Nichols, Hazel B;Chao, Chun;Ruddy, Kathryn J;Hahn, Erin E;Li, Qian;Malogolowkin, Marcio H;Sauder, Candice A M;Kushi, Lawrence H;Wun, Ted;Keegan, Theresa H M
• 通讯作者: Keegan, Theresa H M

Late endocrine diseases in survivors of adolescent and young adult cancer in California: a population-based study.

加利福尼亚州青少年和年轻人癌症幸存者的晚期内分泌疾病：一项基于人群的研究。

• 发表时间: 2024-04
• 影响因子: 8.8
• 作者: Abrahão, Renata;Brunson, Ann;Ruddy, Kathryn J;Li, Qian;Li, Judy;Ryder, Mabel M;Chubak, Jessica;Nichols, Hazel B;Sauder, Candice A M;Gray, Marlaine F;Hahn, Erin E;Wun, Ted;Keegan, Theresa H M
• 通讯作者: Keegan, Theresa H M

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。

• 发表时间: 2023-09
• 影响因子: 3.3
• 作者: Nichols, Hazel B;Wernli, Karen J;Chawla, Neetu;O'Meara, Ellen S;Gray, Marlaine Figueroa;Green, Laura E;Baggett, Christopher D;Casperson, Mallory;Chao, Chun;Jones, Salene M W;Kirchhoff, Anne C;Kuo, Tzy;Lee, Catherine;Malogolowkin, Marcio
• 通讯作者: Malogolowkin, Marcio