Addressing Fertility Information Needs and Fertility-related Distress among Female Adult Survivors of Childhood Cancer

生育能力受损是癌症和癌症治疗的一个非常令人痛苦的、未得到充分解决的晚期效应， 儿童癌症的成年女性幸存者。许多女性幸存者不确定自己的生育状况， 报告未得到满足的生育信息需求和与生育有关的困扰。对于那些想要亲生孩子的人来说， 过高估计生育能力受损的风险可能会造成不必要的情绪和关系困扰。 低估可能会导致失去追求亲生子女的机会，原因包括 卵巢早衰然而，迄今为止，与生育有关的信息需求和困扰在很大程度上仍然存在， 在这个人群中无人知晓。根据行为干预发展的ORBIT模型， 一项拟议的研究旨在设计和完善一种行为干预措施，以解决未得到满足的生育相关信息 儿童癌症成年女性幸存者（18-44岁）的需求和与生育有关的痛苦。一阶段 这项研究将涉及对儿童期癌症的成年女性幸存者（N=20）进行个别访谈， 护理该人群的医疗提供者（N=10），以告知初步的，手动的， 干预基于现有文献和癌症行为干预专家的反馈 幸存者，儿童癌症的成年幸存者和不孕症，预计干预结合 从病人激活理论和接受和承诺疗法的策略将被开发。 干预措施的制定是灵活的，将根据从利益攸关方收到的反馈进行调整。同相 2、初步干预内容将传递给小样本的目标人群（N=30）。可行性 和可接受性，以及审查干预目标的干预前后变化模式 （一级：生育健康知识、生育相关困扰;二级：心理适应能力、耐心 激活和自我效能），将被评估并用于进一步改进干预（例如，干预 策略、干预长度和交付方式）。根据国家癌症研究所的优先研究， 该奖学金的总体目标是支持Stalls博士发展专业知识， 这将使她成为一个领先的临床研究人员在发展和评估的行为 采取干预措施，解决癌症幸存者生殖健康和性健康的后期影响。这样做需要 在以下领域的知识和技能的独特组合：1）生殖和性健康，2）行为 干预发展和评估; 3）专业发展。这些领域的培训将 通过专家赞助商和合作者的指导以及许多资源和 杜克大学提供的培训机会。完成这项研究不仅可以促进 生存文学在这一领域，并推动博士Stalls对她的职业目标，但有助于解决重大 缺乏训练有素的临床研究人员，他们有能力解决这些高度个性化和时间敏感的问题。 生殖健康和性健康癌症和癌症治疗的晚期影响。

Impaired fertility is a highly distressing, under-addressed, late effect of cancer and cancer treatment among female adult survivors of childhood cancer. Many female survivors are uncertain about their fertility status and report unmet fertility information needs and fertility-related distress. For those who desire biological children, overestimation of risk for impaired fertility may cause unnecessary emotional and relational distress. Underestimation may lead to a missed opportunity to pursue having biological children due to factors such as premature ovarian insufficiency. Yet, to date, fertility-related information needs and distress remain largely unaddressed in this population. Following the ORBIT Model for behavioral intervention development, the proposed study seeks to design and refine a behavioral intervention to address unmet fertility-related information needs and fertility-related distress among female adult survivors of childhood cancer (aged 18-44). Phase I of the study will involve conducting individual interviews with female adult survivors of childhood cancer (N=20) and medical providers who care for this population (N=10) to inform the development of a preliminary, manualized, intervention. Based on existing literature and feedback from experts in behavioral interventions for cancer survivors, adult survivors of childhood cancer, and infertility, it is anticipated that an intervention combining strategies from Patient Activation Theory and Acceptance and Commitment Therapy will be developed. Intervention development is flexible and will be tailored based on feedback received from stakeholders. In Phase 2, preliminary intervention content will be delivered to a small sample of the target population (N=30). Feasibility and acceptability, as well as examination of pre- to post-intervention patterns of change in intervention targets (primary: fertility health knowledge, fertility-related distress; secondary: psychological flexibility, patient activation, and self-efficacy), will be assessed and utilized to further refine the intervention (e.g., intervention strategies, intervention length, and delivery modality). In line with the National Cancer Institute's priority research area focused on cancer survivorship, the overall goal of the fellowship is to support Dr. Stalls to develop expertise that will enable her to become a leading clinical researcher in the development and evaluation of behavioral interventions to address reproductive and sexual health late effects among cancer survivors. To do so requires a unique combination of knowledge and skills in the areas of, 1) Reproductive and Sexual Health, 2) Behavioral Intervention Development and Evaluation, and 3) Professional Development. Training in these areas will be accomplished through guidance from expert sponsors and collaborators as well as the many resources and training opportunities offered at Duke University. Completion of this fellowship would not only advance the survivorship literature in this area and propel Dr. Stalls toward her career goals, but help address the significant gap in well-trained clinical researchers who are equipped to address these highly personal and time-sensitive reproductive and sexual health late effects of cancer and cancer treatment.