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.

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