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

基本信息

批准号：
10263879
负责人：
Hazel B Nichols
金额：
$ 25.75万
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/10263879
关键词：
Accreditation Address Adolescent and Young Adult Age Antineoplastic Agents California Cancer Patient Cancer Survivor Caring Consumption Continuity of Patient Care Counseling Data Databases Desired Family Sizes Diagnosis Disease Documentation ERBB2 gene Education Electronic Health Record Elements Ensure Epidermal Growth Factor Receptor Estrogen Receptors Estrogen receptor negative Ethnic Origin Ethnic group Female Adolescents Fertility Fright Future Gender Goals Guidelines Health Resources Healthcare Healthcare Systems Hodgkin Disease Human Impairment Insurance Link Lymphoma Male Adolescents Malignant Neoplasms Malignant neoplasm of testis Medical Medical Records Methodology North Carolina Oncology Operative Surgical Procedures Outcome Study Parents Participant Patients Pattern Pediatric Oncology Preservation Technique Procedures Provider Race Radiation Records 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 income insurance insurance claims large cell Diffuse non-Hodgkin&apos 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 reproductive reproductive outcome socioeconomics sperm cryopreservation survivorship therapy development treatment adherence treatment risk tumor unconscious bias young woman

项目摘要

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，AYA 的生育和癌症护理服务未来的生育能力是许多患有癌症的青少年和年轻人 (AYA) 所关心的一个重要问题。指南普遍建议 AYA 癌症患者在潜在性腺毒性之前进行生育咨询然而，先前的研究表明，患者通常不会接受生育咨询。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，本研究将调查：1）接受生育咨询和获得生育服务方面的潜在差异生育力保存策略；以及，2) 生育力问题如何影响接受推荐的癌症治疗对患有乳腺癌、睾丸癌或淋巴瘤的 AYA 进行治疗。接触专家的机会有限以及提供者推荐中的无意识偏见可能会导致人口统计、失业以及与疾病相关的生育咨询和保存服务方面的差异。如果定期提供，可以快速转介给生育专家，并且可以采取保存策略几周内完成的 AYA，其生育相关问题未通过咨询得到解决。和/或生育力保存策略可能会花费更多时间寻求生育信息或进行医疗他们可能会自行避免或推迟潜在的性腺毒性治疗，从而增加治疗的效果。与患有以下疾病的患者相比，治疗延迟或不开始或不坚持癌症治疗的风险我们的研究将解决生育咨询方面的差距。通过导致次优癌症，可能会产生超出满足患者生殖目标的影响虽然一些小型研究已经部分评估了患有 AYA 的年轻女性的这些问题。乳腺癌，但在 AYA 中尚未对它们与大多数其他癌症进行研究。在本 P01 中，我们计划调查大约 5,000 名 AYA 癌症幸存者。在本项目中，我们将收集数据。有关生育问题、接受生育咨询、使用生育力保存技术的信息，以及可能影响生育服务使用的因素调查参与者将是 AYA 癌症患者 2-10 年。北卡罗来纳大学癌症信息与人口健康中心诊断出癌症后 Resource (CIPHR)、Kaiser Permanente Northern California (KPNC) 和 Kaiser Permanente Southern 加利福尼亚州 (KPSC)。这些设置提供了将调查数据与电子健康记录或链接相关联的机会。记录癌症治疗接受情况的行政索赔数据。这项研究将确定生育咨询服务和生育力保存策略的使用方面的差异，为改善以生育为中心的 AYA 护理（包括针对患者的干预措施）的干预措施的制定提供信息以及临床医生对使用生殖技术的舒适度。该项目为我们增加了一个关键因素。更大的计划解决 AYA 癌症患者从诊断到过渡的独特挑战治疗以求生存。