Optimizing fertility preservation and decision quality in male AYA with cancer: A family-centered intervention

优化患有癌症的男性 AYA 的生育能力保留和决策质量：以家庭为中心的干预措施

• 批准号: 10371075
• 负责人: Leena Nahata
• 金额: $ 20.6万
• 依托单位: RESEARCH INST NATIONWIDE CHILDREN'S HOSP
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-04-01 至 2024-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10371075
• 关键词: 21 year old; Accounting; Adolescent; Adolescent and Young Adult; Age; Agreement; Area; Attention; Attitude; Behavioral Research; Cancer Burden; Cancer Survivor; Child; Childhood; Clinical; Clinical Research; Clinical Trials; Communication; Consult; Counseling; Data Analytics; Decision Making; Development; Development Plans; Diagnosis; Distress; Family; Feedback; Fertility; Fertility Rates; Goals; Healthcare; High Prevalence; Human; Impairment; Individual; Infertility; Intervention; Interview; Knowledge; Life; Male Adolescents; Malignant Neoplasms; Measures; Mentorship; Methods; Mission; Modeling; Morbidity - disease rate; Newly Diagnosed; Oncology; Outcome; Parents; Participant; Patients; Pediatric Hospitals; Persons; Physician Executives; Population; Prospective Studies; Provider; Psychosexual Development; Public Health; Quality of life; Questionnaires; Randomized Controlled Trials; Recommendation; Regrets; Reporting; Research; Research Institute; Research Methodology; Research Training; Resources; Risk; Role; Scientist; Services; Site; Sperm Banks; Standardization; Surveys; Survival Rate; Survivors; System; Testing; Time; Training; Treatment Efficacy; United States National Institutes of Health; Visit; Vulnerable Populations; analytical method; arm; base; burden of illness; cancer diagnosis; cancer therapy; career development; childhood cancer survivor; clinical trial analysis; cohort; design; disability; efficacy evaluation; fertility improvement; fertility preservation; health belief; improved; informant; innovation; male; mortality; multidisciplinary; novel; oncofertility; oncology program; parent-child communication; patient-clinician communication; prospective; psychoeducational intervention; psychosocial; public health relevance; recruit; reproductive; reproductive outcome; satisfaction; skills; sperm cell; standard of care; treatment arm; uptake; young adult

Summary/Abstract: There is a growing population of childhood cancer survivors in the U.S. and 1 in 2 male survivors has impaired fertility. Although pubertal males are able to bank sperm, only 25% of adolescents opt for fertility preservation (FP) prior to cancer treatment. As these adolescents and young adults (AYA) complete therapy and approach their reproductive years, many survivors and their parents regret missed opportunities for FP and report distress about potential infertility. With the majority of studies conducted years after therapy, there is limited information about predictors of FP among AYA males, in addition to decision quality soon after FP decisions are made. Further, most of the interventions in this area have focused on increasing knowledge and improving patient-provider interactions, without accounting for parent-adolescent discussions about FP. Notably, recent research has shown parents' recommendation is one of the strongest predictors of FP uptake among AYA males. The relative ease but underutilization of sperm banking and the psychosocial implications of infertility demonstrate a need for novel family-centered interventions to optimize FP uptake and decision quality for this unique and vulnerable population. My long-term goal is to become an independent clinician-scientist committed to improving reproductive potential and quality of life for childhood cancer survivors. This application proposes two studies (each with two visits), among AYA males (ages 13-21) newly diagnosed with cancer and at risk for infertility, and their parents. Study 1 is a mixed methods, prospective study at the time of cancer diagnosis in 40 AYA and their parents, to examine the impact of individual and family factors based on the Health Belief Model, in the context of communication (quality of communication, provider/parent recommendation to attempt FP), on FP uptake and decision quality. Findings will inform the development of a family-centered psychoeducational intervention to be piloted in a randomized-controlled trial (RCT) in Study 2 among 40 AYA and their parents. My career development plan includes a strong multidisciplinary mentorship team, formal coursework, and seminars in three main focus areas: 1) mixed method, multi- informant behavioral research, including hands-on training in qualitative interviewing and qualitative data analytic methods; 2) family systems and communication regarding FP decisions; and 3) the design, implementation, and analysis of clinical trials. Nationwide Children's Hospital is the ideal setting for this research since there is large AYA Oncology program, valuable resources available in the Research Institute, and strong institutional support for clinical research. Additionally, I serve as the medical director of the fertility team and oversee the clinical consult service, facilitating successful recruitment of families at time of diagnosis. Findings from the proposed research and training will support an R01 to test the intervention in a larger multi- site randomized-controlled trial (RCT). This line of research will greatly enhance reproductive outcomes, which is consistent with NCI's goal to improve quality of life among cancer survivors.

摘要/摘要： 美国儿童癌症幸存者人数不断增加，其中二分之一的男性幸存者患有功能障碍 生育能力。尽管青春期男性能够储存精子，但只有 25% 的青少年选择保留生育能力 (FP) 癌症治疗前。当这些青少年和年轻人 (AYA) 完成治疗和方法时 在他们的生育年龄，许多幸存者及其父母对错过 FP 的机会感到遗憾，并报告 对潜在的不孕不育的困扰。大多数研究是在治疗后数年进行的，但效果有限 除了 FP 决策后不久的决策质量之外，有关 AYA 男性 FP 预测因素的信息 被制作。此外，该领域的大多数干预措施都侧重于增加知识和改进 患者与提供者的互动，没有考虑父母与青少年关于 FP 的讨论。值得注意的是，最近 研究表明，父母的推荐是 AYA 中 FP 吸收的最强预测因素之一 男性。精子库相对容易但未得到充分利用以及不孕症的社会心理影响 证明需要新的以家庭为中心的干预措施来优化 FP 的吸收和决策​​质量 独特且脆弱的人群。我的长期目标是成为一名独立的临床医生科学家 提高儿童癌症幸存者的生殖潜力和生活质量。本申请提出 两项研究（每项有两次就诊），对象是新诊断出患有癌症且有患癌症风险的 AYA 男性（13-21 岁） 不孕症，还有他们的父母。研究 1 是一项混合方法，癌症发生时的前瞻性研究 对 40 名 AYA 及其父母进行诊断，以检查个人和家庭因素的影响 沟通背景下的健康信念模型（沟通质量、提供者/家长 建议尝试 FP)，关于 FP 的采用和决策质量。研究结果将为开发 以家庭为中心的心理教育干预措施将在一项随机对照试验（RCT）中进行试点 研究 2 针对 40 名 AYA 及其父母。我的职业发展计划包括强大的多学科 导师团队、正式课程以及三个主要重点领域的研讨会：1）混合方法、多方法 线人行为研究，包括定性访谈和定性数据的实践培训 分析方法； 2) 家庭系统和有关 FP 决策的沟通； 3）设计， 临床试验的实施和分析。全国儿童医院是实现这一目标的理想场所 由于 AYA 肿瘤学项目规模较大，研究所可提供宝贵的资源， 以及对临床研究的强有力的机构支持。此外，我还担任生育中心的医学主任 团队并监督临床咨询服务，促进诊断时成功招募家庭。 拟议研究和培训的结果将支持 R01 在更大范围内测试干预措施 现场随机对照试验（RCT）。这一系列研究将极大地提高生殖结果， 与 NCI 改善癌症幸存者生活质量的目标是一致的。