Discipline of Genetic Counselling, University of Technology Sydney (T Wilkin, A Stott, A McEwen, and E Turbitt), Ultimo, NSW, Australia.
Department of Pediatrics, University of Utah Health (JL Lin), Salt Lake City, Utah.
Acad Pediatr. 2023 Jul;23(5):874-883. doi: 10.1016/j.acap.2023.02.002. Epub 2023 Feb 11.
Medical decisions parents make on their children's behalf can be challenging. Free online decision support tools are created to help parents faced with these decisions.
We used an environmental scan to identify free, online tools that support parents in making decisions about their children's chronic health condition. We described the tools and assessed their potential to harm, content, development process, readability, and whether their use changed decision makers' knowledge and alignment of their preferences with their final decision.
Decision aid repositories, Google searches, and key informants identified decision support tools. Eligible tools were freely available online and for parents of children with chronic health conditions.
Two reviewers independently assessed the tools' quality based on the International Patient Decision Aid Standards (IPDAS). Tool readability was assessed using the Flesch Reading Ease test.
From 21 free, online decision support tools, 14 (67%) provided sufficient detail for making a specific decision (IPDAS qualifying criteria). None sufficiently met IPDAS certification criteria necessary to reduce the possibility of patient harms when using the tool. Three (14%) were fairly easy or easy to read. Of those evaluated by developers (n = 6), 2 improved knowledge and 4 improved alignment of preferences with the available options.
Google searches and key informant sources are not replicable.
Free, online decision support tools for parents of children with chronic health conditions are of variable quality, most are difficult to read, and there is limited evidence their use achieves intended outcomes.
Registered with Open Science Framework 20 July 2021(AEST) osf.io/b94yj.
父母为子女做出医疗决策可能颇具挑战性。免费的在线决策支持工具旨在帮助面临这些决策的父母。
我们采用环境扫描法，识别出支持父母为子女的慢性健康状况做出决策的免费在线工具。我们描述了这些工具，并评估了它们对父母造成伤害的可能性、内容、开发过程、可读性，以及它们的使用是否改变了决策者的知识和偏好与最终决策的一致性。
决策辅助工具库、谷歌搜索和关键知情人确定了决策支持工具。符合条件的工具是免费在线提供的，适用于患有慢性健康状况的儿童的父母。
两名评审员根据国际患者决策辅助标准（IPDAS）独立评估工具的质量。使用 Flesch 阅读舒适度测试评估工具的可读性。
从 21 种免费的在线决策支持工具中，有 14 种（67%）提供了足够的细节以做出具体决策（符合 IPDAS 资格标准）。没有一种工具完全符合 IPDAS 认证标准，无法降低使用工具时患者受到伤害的可能性。有 3 种（14%）的工具容易或相当容易阅读。在对 6 种由开发者评估的工具中，有 2 种提高了知识水平，4 种提高了偏好与可用选项的一致性。
谷歌搜索和关键知情人来源不可复制。
针对患有慢性健康状况的儿童的父母的免费在线决策支持工具质量参差不齐，大多数可读性较差，而且其使用是否达到预期效果的证据有限。
于 2021 年 7 月 20 日（AEST）在开放科学框架注册osf.io/b94yj。
