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: 9906200
• 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/9906200
• 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; 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; 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： 在美国，儿童癌症幸存者的人数在不断增加，每2名男性幸存者中就有1人患有癌症 生育能力。尽管青春期男性能够保存精子，但只有25%的青少年选择保留生育能力 (FP)在癌症治疗前。作为这些青少年和青壮年(Aya)的完整治疗和方法 他们的生育年龄，许多幸存者和他们的父母后悔错过了FP和报告的机会 对潜在的不孕不育感到苦恼。由于大多数研究都是在治疗后数年进行的，因此 关于Aya男性中FP预测因素的信息，以及FP决定后不久的决策质量 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进 患者-提供者的互动，不考虑父母和青少年关于FP的讨论。值得注意的是，最近 研究表明，父母的推荐是阿雅人感染FP的最有力的预测因素之一 男性。精子库相对容易但未充分利用以及不孕不育的心理社会影响 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 独一无二的弱势群体。我的长期目标是成为一名独立的临床医生--致力于 致力于提高儿童癌症幸存者的生殖潜力和生活质量。此应用程序建议 两项研究(每项研究两次)，对象为Aya男性(13-21岁)，新诊断为癌症，有患癌症的风险 不孕不育，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例阿雅及其父母进行诊断，以考察个人和家庭因素对其影响的基础 健康信念模式，在沟通的背景下(沟通质量、提供者/父母 建议尝试FP)，对FP摄取和决策质量有影响。这些发现将为开发一种 以家庭为中心的心理教育干预将在年进行随机对照试验(RCT) 研究二在40名阿雅及其父母中进行。我的职业发展计划包括强大的多学科 三个主要领域的指导团队、正式课程和研讨会：1)混合方法、多学科 告密者行为研究，包括定性访谈和定性数据方面的实践培训 分析方法；2)关于计划生育决策的家庭系统和沟通；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 研究因为有大型的Aya肿瘤学项目，研究所有宝贵的资源， 为临床研究提供强有力的制度支持。此外，我还担任生育部的医学主任。 团队和监督临床咨询服务，促进在诊断时成功招募家庭。 拟议的研究和培训的结果将支持R01在更大的多个 现场随机对照试验(RCT)。这项研究将极大地提高生殖结果，这 与NCI改善癌症幸存者生活质量的目标是一致的。