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.

总结/摘要： 在美国，儿童癌症幸存者的人数不断增加，每2名男性幸存者中就有1人患有 生育尽管处于青春期的男性能够储存精子，但只有25%的青少年选择保留生育能力。 (FP)在癌症治疗之前。当这些青少年和年轻人（AYA）完成治疗并接近 许多幸存者和他们的父母后悔错过了FP的机会， 对潜在不孕症的担忧大多数研究在治疗后数年进行， 关于AYA男性FP预测因素的信息，以及FP决策后不久的决策质量 都是制造出来的此外，这一领域的大多数干预措施都侧重于增加知识和改善 患者-提供者的互动，没有考虑到父母-青少年关于FP的讨论。值得注意的是， 研究表明，父母的推荐是AYA中FP摄入量的最强预测因素之一 男性。精子库相对容易但利用不足以及不孕症的心理社会影响 证明需要新的以家庭为中心的干预措施，以优化FP摄取和决策质量， 独特而脆弱的人群。我的长期目标是成为一名独立的临床科学家， 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（每项研究有两次访视），在新诊断患有癌症并有癌症风险的AYA男性（13-21岁）中进行 不孕不育和他们的父母研究1是一项混合方法的前瞻性研究，在癌症发生时， 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， 健康信念模型，在沟通的背景下（沟通质量，提供者/父母） 建议尝试计划生育），对计划生育的吸收和决策质量。调查结果将为制定一项 以家庭为中心的心理教育干预将在一项随机对照试验（RCT）中进行试点， 研究2在40名AYA及其父母中进行。我的职业发展计划包括一个强大的多学科 导师团队，正式的课程，和研讨会在三个主要重点领域：1）混合方法，多， 信息行为研究，包括定性访谈和定性数据的实践培训 分析方法; 2）家庭系统和有关计划生育决策的沟通;以及3）设计， 临床试验的实施和分析。全国儿童医院是这方面的理想场所 研究，因为有大型的AYA肿瘤学计划，研究所提供的宝贵资源， 为临床研究提供强有力的机构支持。另外，我是生育中心的医学主任 协调和监督临床咨询服务，促进在诊断时成功招募家庭。 拟议研究和培训的结果将支持R 01在更大的多个国家中测试干预措施， 随机对照试验（RCT）。这一系列研究将极大地提高生殖结果，这 与NCI提高癌症幸存者生活质量的目标一致。