Department of Psychology, School of Social Sciences, Leeds Beckett University, Leeds, LS1 3HE, UK.
Institute of Health Sciences - School of Medicine, University of Leeds, Leeds, UK.
BMC Med Inform Decis Mak. 2018 Nov 19;18(1):104. doi: 10.1186/s12911-018-0698-3.
To identify publicly available internet resources and assess their likelihood to support women making informed decisions about, and between, fertility preservation procedures before starting their cancer treatment.
A survey of publically available internet resources utilising an environmental scan method. Inclusion criteria were applied to hits from searches of three data sources (November 2015; repeated June 2017): Google (Chrome) for patient resources; repositories for clinical guidelines and projects; distribution email lists to contact patient decision aid experts. The Data Extraction Sheet applied to eligible resources elicited: resource characteristics; informed and shared decision making components; engagement health services.
Four thousand eight hundred fifty one records were identified; 24 patient resources and 0 clinical guidelines met scan inclusion criteria. Most resources aimed to inform women with cancer about fertility preservation procedures and infertility treatment options, but not decision making between options. There was a lack of consistency about how health conditions, decision problems and treatment options were described, and resources were difficult to understand.
Unless developed as part of a patient decision aid project, resources did not include components to support proactively women's fertility preservation decisions. Current guidelines help people deliver information relevant to treatment options within a single disease pathway; we identified five additional components for patient decision aid checklists to support more effectively people's treatment decision making across health pathways, linking current with future health problems.
为了确定可用的互联网资源，并评估其在癌症治疗前支持女性对生育力保存程序做出知情决策的可能性。
采用环境扫描法对公共互联网资源进行调查。从三个数据源（2015 年 11 月；2017 年 6 月重复）的搜索结果中应用纳入标准：谷歌（Chrome）搜索患者资源；临床指南和项目的存储库；分发电子邮件列表以联系患者决策辅助专家。应用于合格资源的数据提取表得出：资源特征；知情和共同决策组成部分；参与卫生服务。
确定了 4851 条记录；24 个患者资源和 0 个临床指南符合扫描纳入标准。大多数资源旨在向患有癌症的女性告知生育力保存程序和不孕治疗选择，但不包括选择之间的决策。关于如何描述健康状况、决策问题和治疗选择，资源缺乏一致性，且难以理解。
除非作为患者决策辅助项目的一部分开发，否则资源不包括支持女性主动进行生育力保存决策的组件。现行指南有助于人们提供与单一疾病途径内的治疗选择相关的信息；我们确定了患者决策辅助清单的五个附加组件，以更有效地支持人们在整个健康途径中的治疗决策，将当前与未来的健康问题联系起来。
