探索生育和早绝经相关信息需求以及为年轻乳腺癌幸存者开发在线信息。
Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors.
机构信息
Department of Obstetrics and Gynaecology, Radboud University Medical Center, P.O. Box 9101, 6500HB, Nijmegen, The Netherlands.
Scientific Institute for Quality of Healthcare (IQ Healthcare), Radboud University Medical Center, P.O. Box 9101, 6500HB, Nijmegen, The Netherlands.
出版信息
BMC Womens Health. 2022 Aug 3;22(1):329. doi: 10.1186/s12905-022-01901-z.
BACKGROUND
Approximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finish treatment. Counseling about the risk of infertility prior to cancer treatment has been proven to improve quality of life after cancer treatment. As a result of this, guidelines focus on informing women on this topic prior to treatment. However, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual. Therefore, the aim of this study was to identify the fertility and early menopause related information needs of young breast cancer survivors and to design, develop and implement online information material with input of stakeholders.
METHODS
A phenomenological qualitative study consisting of four phases was performed: identification of information needs through semi-structured interviews from a professional perspective (1) and a patient perspective (2). Exploration of stakeholders perspective regarding development and implementation of online information material (3) and development and implementation of the information material (4).
RESULTS
Professionals indicated that there are no guidelines regarding the provision of fertility related information during cancer survivorship. Survivors reported unmet information needs. Women identified the following as most important information needs (a) fertility preservation options, (b) the risk of menopause or infertility, and (c) long term consequences of early menopause. A wide range of stakeholders involved in breast cancer care were interviewed. Based on their proposed design the information material was implemented on a nationwide website aiming at informing and supporting breast cancer patients.
CONCLUSIONS
Fertility and early menopause related information needs of young breast cancer survivors and their professionals were identified. Information material has been designed, developed and nationally implemented. This way, professionals in breast cancer care are provided with an information tool that helps them meet the information needs and preferences of their patients.
背景
大约一半的被诊断患有乳腺癌的绝经前女性在完成治疗后希望怀孕。在癌症治疗前对不孕风险进行咨询已被证明可以提高癌症治疗后的生活质量。因此，指南侧重于在治疗前向女性提供有关这一主题的信息。然而，在主要治疗完成后，当怀孕的愿望可能成为现实时，提供与生育相关的信息同样重要。因此，本研究的目的是确定年轻乳腺癌幸存者的生育和早期绝经相关信息需求，并在利益相关者的参与下设计、开发和实施在线信息材料。
方法
进行了一项包含四个阶段的现象学定性研究：通过专业视角（1）和患者视角（2）的半结构化访谈来确定信息需求。探索利益相关者对在线信息材料的开发和实施的看法（3）以及信息材料的开发和实施（4）。
结果
专业人员表示，在癌症存活期间没有关于提供生育相关信息的指南。幸存者报告存在未满足的信息需求。女性确定了以下是最重要的信息需求：（a）生育保护选择，（b）绝经或不孕风险，以及（c）早期绝经的长期后果。广泛的参与乳腺癌护理的利益相关者接受了采访。根据他们提出的设计，信息材料已在全国性网站上实施，旨在为乳腺癌患者提供信息和支持。
结论
确定了年轻乳腺癌幸存者及其专业人员的生育和早期绝经相关信息需求。已经设计、开发和全国范围内实施了信息材料。这样，乳腺癌护理方面的专业人员就可以获得一种信息工具，帮助他们满足患者的信息需求和偏好。
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