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： 美国的儿童癌症幸存者人数越来越多，有2位男性幸存者损害了。 生育能力。尽管青春期的男性能够储存精子，但只有25％的青少年选择生育能力 （FP）在癌症治疗之前。这些青少年和年轻人（AYA）完整的疗法和方法 他们的生殖时代，许多幸存者和父母后悔错过了FP的机会，并报告了 对潜在不孕症的困扰。随着治疗后几年进行的大多数研究， 除了FP决策之后，除了决策质量外，AYA男性中FP的预测因素的信息 制作。此外，该领域的大多数干预措施都集中在增加知识和改善 患者提供者的相互作用，而没有考虑对FP的父母青少年讨论。值得注意的是，最近 研究表明，父母的建议是AYA中FP吸收的最强预测指标之一 男性。精子银行业务的相对轻松但不足的不足和不育的社会心理意义 证明需要以新颖的家庭为中心的干预措施来优化FP的吸收和决策​​质量 独特而脆弱的人口。我的长期目标是成为独立的临床医生科学家 改善儿童癌症幸存者的生殖潜力和生活质量。此申请提出 两项研究（每项都有两次访问），在Aya雄性（13-21岁）中，新诊断为癌症，有风险 不孕症和他们的父母。研究1是一种混合方法，癌症时的前瞻性研究 40 Aya及其父母的诊断，以根据基于个人和家庭因素的影响 健康信念模型，在交流的背景下（沟通质量，提供者/父母 建议尝试FP），fp吸收和决策​​质量。调查结果将告知开发 以家庭为中心的心理教育干预措施将在随机控制试验（RCT）中进行试验 研究2在40 Aya及其父母中。我的职业发展计划包括一个强大的多学科 指导团队，正式课程和研讨会在三个主要重点领域：1）混合方法，多 线人行为研究，包括定性访谈和定性数据的动手培训 分析方法； 2）有关FP决策的家庭系统和沟通； 3）设计， 实施和分析临床试验。全国儿童医院是理想的环境 研究由于有大型AYA肿瘤学计划，因此研究所可提供宝贵资源 以及对临床研究的强烈机构支持。此外，我担任生育的医疗总监 团队并监督临床咨询服务，促进诊断时成功招募家庭。 拟议的研究和培训的发现将支持R01，以测试更大的多种多样的干预措施 站点随机控制试验（RCT）。这项研究将大大增强生殖结果，这 与NCI的目标是改善癌症幸存者生活质量的目标。