Adaptation and implementation of a web-based Family centered Adolescent Sperm banking decision Tool for adolescent males with cancer

适应和实施基于网络的以家庭为中心的青少年精子库决策工具，用于患有癌症的青少年男性

• 批准号: 10733849
• 负责人: Leena Nahata
• 金额: $ 36.71万
• 依托单位: RESEARCH INST NATIONWIDE CHILDREN'S HOSP
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-21 至 2028-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10733849
• 关键词: 21 year old; Address; Adolescence; Adolescent; Adoption; Attitude; Behavior Therapy; Cancer Burden; Cancer Center; Caregivers; Caring; Chronic Disease; Clinical; Clinical Pathways; Communication; Consult; Control Groups; Counseling; Dedications; Enrollment; Ensure; Equity; Evaluation; Family; Feedback; Fertility; Focus Groups; Funding; Future; Goals; Guidelines; Hospitals; Human; Impairment; Infertility; Infrastructure; Inpatients; Institution; Internet; Knowledge; Late Effects; Life; Male Adolescents; Malignant Childhood Neoplasm; Malignant Neoplasms; Methods; Mission; Modification; Morbidity - disease rate; Newly Diagnosed; Online Systems; Organizational Change; Outcome; Outpatients; Parents; Pathway interactions; Patients; Pilot Projects; Population; Provider; Public Health; Quality of Care; Quality of life; Recommendation; Reporting; Research; Resource-limited setting; Resources; Services; Site; Son; Sperm Banks; Survival Rate; Survivors; System; Team Process; Testing; Thinking; Time; Underserved Population; United States National Institutes of Health; Work; burden of illness; cancer therapy; childhood cancer survivor; design; disability; effectiveness/implementation trial; family building; fertility preservation; future implementation; group intervention; implementation context; implementation strategy; improved; innovation; male; mortality; multidisciplinary; novel; oncofertility; premalignant; programs; prospective; psychosocial; public health relevance; reproductive; reproductive outcome; satisfaction; shared decision making; tool; treatment effect; usability; web platform; web-based tool

PROJECT SUMMARY Advances in childhood cancer therapies have resulted in >80% five-year survival rates.1 With nearly 500,000 childhood cancer survivors in the U.S., there is a growing need to address and mitigate late effects of treatment.2,3 Fertility impairment occurs in about half of male childhood cancer survivors and can negatively impact quality of life.4,5 Sperm banking is an established and widely available form of fertility preservation.6 Despite recognizing the value of future parenthood and guidelines to bank sperm before treatment,6,7 banking remains underutilized among male adolescents with cancer, especially at hospitals with low resources.8-10 Studies show adolescent males are more likely to bank sperm prior to cancer treatment if: 1) their institution has dedicated fertility services,11 2) their provider recommends banking,12 and 3) their parents recommend it.13 To improve equitable care and access to sperm banking opportunities,10 family-centered decision tools, and strategies to implement these tools, are critical. Our team developed the Family-centered Adolescent Sperm banking Tool (FAST) and tested it prospectively among families of adolescent males newly diagnosed with cancer. We found the FAST prompted deeper thinking and facilitated family communication about parenthood goals and banking,17 and that sperm banking rates increased significantly.19 Given feasibility and equity considerations (i.e., short time frame, variety of settings in which fertility counseling is delivered), the objective of this proposal is to adapt the FAST to a web-based tool that can be accessed in inpatient/outpatient/non- clinical settings, identify implementation strategies for high and low-resourced settings, and test these in a three-site pilot study among 110 families of adolescent males (13-21 years of age) newly diagnosed with cancer. Specific aims are to: 1) adapt the FAST (design and delivery) based on patient and caregiver stakeholder feedback (usability testing), which will result in a web-based tool that is functional, acceptable to families, and feasible to implement pre-cancer treatment; 2) conduct rapid contextual inquiry using a mixed- methods approach with clinician stakeholders, to identify tailored implementation strategies for the web-based FAST in both high and low-resourced pediatric cancer centers, prepare for adoption into clinical pathways, and ensure fidelity and sustainability, and 3) pilot the web-based FAST and tailored implementation strategies locally and at 2 additional sites (1 high and 1 low-resourced) to examine feasibility, acceptability, and impact on banking rates (pre-/post design) to prepare for a larger multi-site hybrid implementation-effectiveness trial. Findings will result in an innovative decision tool that can be easily accessed on the web and implemented at a wide variety of high and low-resourced settings to facilitate banking decisions among adolescent males with cancer. These efforts will optimize long-term outcomes by expanding opportunities for parenthood and contributing to improved quality of life in a growing population of survivors, including underserved populations.

项目摘要 儿童癌症疗法的进步导致五年生存率> 80％。1有近500,000 儿童期癌症幸存者在美国，越来越需要解决和减轻迟到的影响 治疗。2,3生育障碍发生在大约一半的男性癌症幸存者中，可能会负面 影响生活质量。4,5精子银行是一种已建立且广泛可用的生育能力形式。6 尽管在治疗前认识到未来的父母身份和对银行精子的准则的价值，但6,7银行业务 在癌症的男性青少年中，尤其是在资源低的医院中，仍未得到充分利用。8-10 研究表明，青春期男性在癌症治疗之前更有可能在癌症治疗前进行库存精子 拥有专用的生育服务，11 2）他们的提供商建议银行业，12和3）他们的父母推荐它。13 改善公平护理和获得精子银行机会的机会，10个以家庭为中心的决策工具以及 实施这些工具的策略至关重要。我们的团队开发了以家庭为中心的青少年精子 银行工具（快速），并在新诊断的青少年男性家庭中进行了前瞻性测试 癌症。我们发现迅速的促使人们更深入思考和促进了家庭沟通有关父母的沟通 目标和银行业务，17，精子银行率显着提高。19给定可行性和公平性 考虑因素（即短时间，提供生育咨询的各种设置），目标 该提案的内容是将快速适应基于Web的工具，该工具可以在住院/门诊/非 - 临床环境，确定高资源和低资源设置的实施策略，并在 110个青春期男性（13-21岁）的三个地点试点研究新诊断 癌症。具体目的是：1）根据患者和护理人员调整快速（设计和交付） 利益相关者的反馈（可用性测试），这将导致基于网络的工具，该工具功能可接受，可以接受 家庭，可以实施前癌症治疗； 2）使用混合 临床医生利益相关者的方法方法，以确定基于Web的量身定制的实施策略 在高资源和低资源的儿科癌症中心中快速，准备采用临床途径，并 确保保真度和可持续性，以及3）在基于网络的快速和量身定制的实施策略中驾驶 在本地和其他2个地点（1个高和1低资源），以检查可行性，可接受性和影响 银行率（预/后设计）为更大的多站点混合实施效果试验做准备。 调查结果将导致一种创新的决策工具，该工具可以在网络上轻松访问并在 各种各样的高资源和低资源环境，以促进青少年男性的银行决策 癌症。这些努力将通过扩大父母的机会和 在越来越多的幸存者中，包括服务不足的人群的生活质量改善。