Hoffman Aubri, Crocker Laura, Mathur Aakrati, Holman Deborah, Weston June, Campbell Sukhkamal, Housten Ashley, Bradford Andrea, Agrawala Shilpi, Woodard Terri L
Department of Gynecological Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, United States.
Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, TX, United States.
JMIR Form Res. 2021 Jun 7;5(6):e25083. doi: 10.2196/25083.
As cancer treatments continue to improve, it is increasingly important that women of reproductive age have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer; however, as few as 12% of women recall discussing fertility preservation. The long-term goal of this program is to develop an interactive web-based patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decision-making needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions.
This study aims to assess providers' and survivors' fertility preservation decision-making experiences, unmet needs, and initial design preferences to inform the development of a web-based patient decision aid.
Semistructured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed the transcripts using NVivo (QSR International). A stakeholder advisory panel guided the study and interpretation of results.
A total of 51 participants participated in 46 interviews (18 providers and 28 survivors) and 1 ad hoc focus group (7 survivors). The primary themes included the importance of fertility decisions for survivorship, the existence of significant but potentially modifiable barriers to optimal decision making, and a strong support for developing a carefully designed patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation.
Decision making about fertility preservation is an important step in providing high-quality comprehensive cancer care and a priority for many survivors' optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate toward an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women's clinical characteristics and their information-seeking and deliberative styles.
随着癌症治疗方法不断改进，育龄女性有机会决定是否接受生育力保存治疗以尝试保护她们患癌后生育孩子的能力变得愈发重要。临床实践指南建议医疗服务提供者为所有患癌年轻女性提供生育咨询；然而，只有12%的女性记得曾讨论过生育力保存问题。该项目的长期目标是开发一个基于网络的交互式患者决策辅助工具，以提高所有患癌年轻女性的认知度、可及性、知识水平和决策能力。国际患者决策辅助工具标准协作组织建议进行正式的决策需求评估，以为设计易于理解、有意义且实用的患者决策辅助干预措施提供信息并加以指导。
本研究旨在评估医疗服务提供者和幸存者在生育力保存决策方面的经历、未满足的需求以及初始设计偏好，以为基于网络的患者决策辅助工具的开发提供信息。
采用半结构化访谈和一个特设焦点小组来评估当前的决策经历、未满足的需求以及对患者决策辅助工具的建议。两名研究人员使用NVivo（QSR国际公司）对访谈记录进行编码和分析。一个利益相关者咨询小组指导了该研究及结果解读。
共有51名参与者参与了46次访谈（18名医疗服务提供者和28名幸存者）以及1个特设焦点小组（7名幸存者）。主要主题包括生育决策对生存的重要性、存在重大但可能可改变的最佳决策障碍，以及对开发精心设计的患者决策辅助网站的大力支持。医疗服务提供者报告称需要一种能够迅速提高认知度并促进及时转诊的干预措施。幸存者报告称需要易于理解的信息以及在应对不确定性、费用和压力方面的帮助。设计建议包括提供量身定制的信息（如按年龄和癌症类型）、可选的交互式功能以及在多个时间点以多媒体形式提供信息，最好是在咨询之外的时间。
生育力保存决策是提供高质量综合癌症护理的重要一步，也是许多幸存者实现最佳生活质量的优先事项。需要决策支持干预措施来弥补护理差距，并帮助女性迅速做出明智的、符合自身价值观的决策。幸存者和医疗服务提供者支持开发一个患者决策辅助网站，以便在咨询之外直接向女性提供信息，并根据女性的临床特征及其信息寻求和审议方式提供自我定制的内容。
