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 儿童癌症治疗的进步已经导致>80%的五年生存率。 美国的儿童癌症幸存者，越来越需要解决和减轻 2，3大约一半的男性儿童癌症幸存者发生生育障碍， 影响生活质量。4，5精子库是一种成熟且广泛使用的生育能力恢复形式。6 尽管认识到未来为人父母的价值和治疗前储存精子的指导方针， 在患有癌症的男性青少年中，特别是在资源匮乏的医院， 研究表明，青少年男性更有可能在癌症治疗前储存精子，如果：1）他们的机构 有专门的生育服务，11 2）他们的提供者推荐银行，12和3）他们的父母推荐。 为了改善公平的护理和获得精子银行的机会，10个以家庭为中心的决策工具， 实施这些工具的战略至关重要。我们的团队开发了以家庭为中心的青少年精子 银行工具（FAST），并在新诊断的青少年男性家庭中进行前瞻性测试， 癌我们发现FAST促进了更深入的思考，并促进了家庭对父母身份的沟通 目标和银行，17和精子银行率显着增加。 考虑因素（即，时间短，提供生育咨询的环境多种多样），目标 该提案的目的是使FAST适应基于网络的工具，可以在住院/门诊/非住院患者中访问， 临床设置，确定高和低资源设置的实施策略，并在一个 一项在110个新诊断的青少年男性（13-21岁）家庭中进行的三点试点研究 癌具体目标是：1）根据患者和护理人员调整FAST（设计和交付） 利益相关者的反馈（可用性测试），这将导致一个基于网络的工具，是功能，可接受的， 家庭，并可行的实施癌前治疗; 2）进行快速的背景调查，使用混合- 方法与临床医生利益相关者，以确定量身定制的实施策略，为基于网络的 FAST在高资源和低资源的儿科癌症中心，准备采用临床路径， 确保保真度和可持续性，以及3）试点基于网络的FAST和量身定制的实施战略 在当地和另外2个地点（1个高资源和1个低资源），以检查可行性、可接受性和对 银行费率（前/后设计），为更大规模的多地点混合实施效果试验做准备。 调查结果将导致一个创新的决策工具，可以很容易地在网络上访问，并在一个实施 各种各样的高和低资源环境，以促进青少年男性的银行决策， 癌这些努力将扩大为人父母的机会， 帮助提高越来越多的幸存者，包括得不到充分服务的人群的生活质量。