Centre for Health Studies and Research of the University of Coimbra (CEISUC), Coimbra, Portugal.
Psycho-oncology, Neuropsychiatry Unit, Champalimaud Foundation, Lisbon, Portugal.
BMJ Open. 2019 Jul 24;9(7):e030690. doi: 10.1136/bmjopen-2019-030690.
Young patients with breast cancer may face impaired fertility due to cancer treatments, which often leads to complex fertility decisions. To aid fertility decision-making, it is crucial that women have access to high-quality information; however, their fertility information needs are often unmet. Decision aids (DAs) are educational materials to assist with decision-making, by addressing individual values and preferences. In oncofertility, DAs may constitute a valuable resource to help patients obtain information and make better informed decisions. This paper reports on the protocol of the development and transcreation of a fertility-related DA booklet to support young Portuguese patients with breast cancer, originally developed and validated for an Australian audience.
Recent literature on clinical guidelines will be reviewed. A summary of these guidelines will be created and will inform the first round of DAs revisions. A forward translation process will translate the DA from Australian English to Portuguese. A multidisciplinary Portuguese experts panel will revise and give feedback on the scientific and cultural aspects of the DA content for Portuguese audience. Next, a backward translation process will assess content equivalence between the original and the final adapted version. Finally, Learner Verification (LV) will be used in a qualitative study of young patients with breast cancer and their partners. Two focus groups with 6-10 participants each will be conducted with: (1) recently diagnosed young patients with breast cancer; (2) breast cancer survivors and (3) their partners. Results from the DA acceptability assessment will inform its final version. Data will be analysed using content analysis and constant comparison method to identify key themes/textual units related to LV.
Ethical approval was granted by the Portuguese Institute of Oncology Porto. Results will be disseminated through peer-reviewed journals and presented at scientific meetings for academic and health professionals audiences.
由于癌症治疗，年轻的乳腺癌患者可能面临生育能力受损的问题，这往往导致他们需要做出复杂的生育决策。为了帮助他们做出生育决策，让他们获得高质量的信息至关重要；然而，他们的生育信息需求往往得不到满足。决策辅助工具（DAs）是一种教育材料，可以通过解决个人价值观和偏好来帮助决策。在肿瘤生育学中，DAs 可能是帮助患者获取信息并做出更好决策的有价值资源。本文报告了一份为支持年轻葡萄牙乳腺癌患者而开发和翻译生育相关决策辅助工具手册的方案，该手册最初是为澳大利亚受众开发和验证的。
将对最近关于临床指南的文献进行回顾。这些指南的摘要将被创建，并为第一轮 DAs 修订提供信息。通过正向翻译过程，将 DA 从澳大利亚英语翻译为葡萄牙语。一个多学科的葡萄牙专家小组将对 DA 内容的科学和文化方面进行修订，并提供反馈，以适应葡萄牙受众。接下来，将通过反向翻译过程评估原始版本和最终改编版本之间的内容等效性。最后，学习者验证（LV）将用于对年轻乳腺癌患者及其伴侣进行定性研究。将对以下两组参与者进行 2 个焦点小组讨论，每组 6-10 人：（1）最近被诊断患有乳腺癌的年轻患者；（2）乳腺癌幸存者和（3）他们的伴侣。DA 可接受性评估的结果将为其最终版本提供信息。将使用内容分析和恒定比较法对数据进行分析，以识别与 LV 相关的关键主题/文本单元。
葡萄牙波尔图肿瘤研究所已批准该伦理。结果将通过同行评议的期刊发表，并在学术和医疗专业人员的科学会议上展示。
