Johnson Erin P, Riches Naomi O, Aljardali Marwa W, Nussbaum Penelope, Dean-Olmsted Evelyn, Rothwell Erin
University of Utah, School of Medicine, Department of Obstetrics and Gynecology, Salt Lake City, Utah.
University of Texas Southwestern Medical Center, Department of Obstetrics and Gynecology, Division of Basic Research and Laboratory of Signaling and Gene Regulation, Cecil H. and Ida Green Center for Reproductive Biology Sciences, Dallas, Texas.
Genet Med Open. 2024;2. doi: 10.1016/j.gimo.2024.101821. Epub 2024 Feb 1.
The goal of this paper is to explore what online education and decision support tools are freely available to patients about prenatal screening.
We 1) conducted an environmental scan using Google Trends to identify and evaluate prenatal screening search terms, 2) created a list of websites and YouTube videos that would be easily accessed by a searcher and 3) characterized the information within those websites and videos, including an examination of their qualities as a decision support tool and a readability analysis.
Fifty websites, containing 62 unique educational resources, and 39 YouTube videos were analyzed. The websites were primarily educational, though the education was provided by a range of sources including non-profit and for-profit organizations, universities, and governments (i.e., public health departments). Readability scores (PEMAT-P) for the sites ranged from 50% to 92%, with a median score of 74%. Two of the websites we evaluated met all of the limited decision support standards we applied; four of the websites included patient stories or experiences and eight included some element of values clarification. Videos were more likely to include values clarification.
The information available to patients online is variable. While most is balanced and informative, much is difficult to read and missing key decision-making factors. Healthcare providers should work with patients to ensure they have basic comprehension of the prenatal genetic screening materials, possible result outcomes, and expected steps following a positive screening result.
本文的目的是探讨患者可免费获取哪些关于产前筛查的在线教育和决策支持工具。
我们1）利用谷歌趋势进行环境扫描，以识别和评估产前筛查搜索词；2）创建一份搜索者易于访问的网站和YouTube视频列表；3）对这些网站和视频中的信息进行特征描述，包括检查它们作为决策支持工具的质量以及可读性分析。
分析了50个网站（包含62个独特的教育资源）和39个YouTube视频。这些网站主要是提供教育内容的，不过教育内容的来源广泛，包括非营利组织、营利组织、大学和政府（即公共卫生部门）。这些网站的可读性得分（PEMAT - P）在50%至92%之间，中位数为74%。我们评估的网站中有两个符合我们应用的所有有限决策支持标准；四个网站包含患者故事或经历，八个网站包含一些价值观澄清元素。视频更有可能包含价值观澄清内容。
患者在线获取的信息参差不齐。虽然大多数信息是平衡且内容丰富的，但许多信息难以阅读且缺少关键决策因素。医疗保健提供者应与患者合作，确保他们对产前基因筛查材料、可能的结果以及阳性筛查结果后的预期步骤有基本的理解。
