Project 1: Fertility and Cancer Care Delivery for Adolescents and Young Adults

项目 1：为青少年和年轻人提供生育和癌症护理服务

• 批准号: 10658892
• 负责人: Hazel B Nichols
• 金额: $ 21.33万
• 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/10658892
• 关键词: Accreditation; Address; Adolescent and Young Adult; Adolescent and young adult cancer patients; Age; Antineoplastic Agents; California; Cancer Survivor; Caring; Consumption; Continuity of Patient Care; Counseling; Data; Databases; Desired Family Sizes; Diagnosis; Disease; Disparity; Documentation; Education; Electronic Health Record; Elements; Epidermal Growth Factor Receptor; Estrogen Receptors; Estrogen receptor negative; Ethnic Origin; Ethnic Population; Female Adolescents; Fertility; Fright; Future; Gender; Goals; Guidelines; Health Resources; Healthcare; Healthcare Systems; Hodgkin Disease; Human; Impairment; Income; Insurance; Link; Lymphoma; Male Adolescents; Malignant Neoplasms; Malignant neoplasm of testis; Medical; Medical Records; Methodology; North Carolina; Oncology; Operative Surgical Procedures; Parents; Participant; Patients; Pediatric Oncology; Preservation Technique; Procedures; Provider; Race; Radiation therapy; Recommendation; Records; Recurrent Malignant Neoplasm; Reporting; Reproductive Technology; Research; Rural; Sampling; Services; Socioeconomic Status; Specialist; Surveys; System; Therapeutic; Time; Training; Translating; Treatment outcome; Universities; Woman; adjuvant endocrine therapy; breast cancer diagnosis; cancer care; cancer diagnosis; cancer health disparity; cancer recurrence; cancer survival; cancer therapy; cancer type; care delivery; chemotherapy; clinical care; community center; cost; embryo cryopreservation; experience; fertility improvement; fertility preservation; improved; insurance claims; large cell Diffuse non-Hodgkin' s lymphoma; malignant breast neoplasm; medical appointment; medical specialties; meetings; men; neoplasm registry; oocyte cryopreservation; patient subsets; population health; preservation; programs; provider factors; racial minority population; reproductive; reproductive outcome; socioeconomics; sperm cryopreservation; survivorship; therapy development; treatment adherence; treatment pattern; treatment risk; tumor; unconscious bias; young woman

ABSTRACT – Project 1, Fertility and Cancer Care Delivery in AYAs Future fertility is a critical concern for many adolescents and young adults (AYAs) with cancer. National guidelines universally recommend fertility counseling for AYA cancer patients before potentially gonadotoxic treatment begins. However, prior studies have shown that patients often do not receive fertility counseling. With the long-term goal of examining how fertility counseling may enhance cancer treatment adherence and outcomes, this study will investigate: 1) potential disparities in receipt of fertility counseling and access to fertility preservation strategies; and, 2) how fertility concerns impact the receipt of recommended cancer treatments for AYAs with breast cancer, testicular cancer, or lymphoma. Limited access to specialists and unconscious biases in provider referrals may result in demographic, socioeconomic, and disease-related disparities in receipt of fertility counseling and preservation services. When routinely provided, referrals to fertility specialists can be rapid and preservation strategies can be completed within a few weeks. AYAs whose fertility-related concerns are not addressed though counseling and/or fertility preservation strategies may spend more time seeking fertility information or making medical appointments on their own. They may avoid or postpone potentially gonadotoxic therapies, increasing their risk of treatment delays or non-initiation or non-persistence of cancer therapies compared to patients whose fertility-related concerns are addressed. Our study will investigate how gaps in delivery of fertility counseling may have an impact beyond meeting patients’ reproductive goals, by contributing to suboptimal cancer treatments for AYAs. While several small studies have partially assessed these issues in young women with breast cancer, they remain unstudied in AYAs with most other cancers. In this P01, we plan to survey approximately 5,000 AYA cancer survivors. For this Project, we will collect information on fertility concerns, receipt of fertility counseling, use of fertility preservation techniques, and factors that may influence use of fertility services. Survey participants will be AYA cancer patients 2–10 years after a cancer diagnosis from the University of North Carolina Cancer Information & Population Health Resource (CIPHR), Kaiser Permanente Northern California (KPNC), and Kaiser Permanente Southern California (KPSC). These settings provide the opportunity to link survey data with electronic health records or administrative claims data that document receipt of cancer treatment. This study will identify disparities in fertility counseling delivery and use of fertility preservation strategies, informing development of interventions to improve fertility-focused AYA care, including those that target patient and clinician comfort with the use of reproductive technologies. This project adds a critical element to our larger program addressing the unique challenges of AYA cancer patients transitioning from diagnosis to treatment to survivorship.

摘要-项目1，AYAS的生育率和癌症护理服务 对于许多患有癌症的青少年和年轻人(AYA)来说，未来的生育能力是一个关键问题。全国 指南普遍建议Aya癌症患者在可能产生性腺毒性之前进行生育咨询 治疗开始了。然而，先前的研究表明，患者往往不接受生育咨询。 长期目标是研究生育咨询如何提高癌症治疗的依从性和 结果，这项研究将调查：1)在接受生育咨询和获得 生育力保护策略；以及，2)对生育力的担忧如何影响推荐癌症的接受 治疗患有乳腺癌、睾丸癌或淋巴瘤的AYA。 对专家的有限接触和提供者推荐中的无意识偏见可能会导致人口统计， 接受生育咨询和保存服务方面的社会经济差异和与疾病有关的差异。 在例行提供的情况下，转诊到生育专家的速度可能会很快，保存策略可能会 在几周内完成。Ayas的生育相关问题没有通过咨询得到解决 和/或保持生育能力的策略可能会花费更多的时间来寻找生育信息或进行医疗 他们可以自己预约。他们可能会避免或推迟潜在的性腺激素治疗，从而增加他们的 与以下患者相比，治疗延迟或癌症治疗不开始或不持续的风险 解决了与生育有关的问题。我们的研究将调查生育咨询分娩方面的差距 可能会产生超出患者生殖目标的影响，导致次优癌症 对AYA的治疗。虽然一些小型研究已经部分评估了年轻女性中的这些问题 乳腺癌，它们与大多数其他癌症一样，在AYA中仍未得到研究。 在今年的P01中，我们计划调查大约5000名Aya癌症幸存者。对于这个项目，我们将收集 关于生育问题、接受生育咨询、使用保持生育技术的信息，以及 可能影响生育服务使用的因素。调查参与者将是2-10年的Aya癌症患者 在北卡罗来纳大学癌症信息和人口健康被诊断为癌症后 资源(CIPHR)、Kaiser Permanente North California(KPNC)和Kaiser Permanente Southern 加州(KPSC)。这些设置提供了将调查数据与电子健康记录或 记录癌症治疗收据的行政索赔数据。 这项研究将确定在生育咨询提供和使用生育保护策略方面的差异， 通知制定干预措施，以改善以生育为重点的Aya护理，包括针对患者的干预 和临床医生对生殖技术的使用感到舒适。该项目为我们的 更大的计划解决Aya癌症患者从诊断过渡到 求生之道。