Division of Critical Care and Hospital Medicine, Department of Pediatrics, Columbia University Valegos College of Physicians and Surgeons, New York, New York, USA.
Division of Pulmonary Medicine, Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Pediatr Pulmonol. 2021 May;56(5):1198-1204. doi: 10.1002/ppul.25221. Epub 2020 Dec 23.
To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource.
The Ottawa Decision Support Framework was followed. Previous interviews with 44 lay and 15 professional stakeholders and published literature provided content for a booklet. Iterative versions were cognitive tested with six parents facing decisions and five pediatric intensivists. Ten parents facing decisions evaluated the booklet using the Preparation for Decision Making Scale and reported their decisional conflict, which was juxtaposed to the conflict of 21 parents who did not read it, using the Decisional Conflict Scale. Twelve home ventilation program directors evaluated the booklet's clinical sensibility and sensitivity, using a self-designed six-item questionnaire. Data presented using summary statistics.
The illustrated booklet (6th-grade reading level) has nine topical sections on chronic respiratory failure and invasive and noninvasive LTV, including the option to forgo LTV. Ten parents who read the booklet rated it as helping "Quite a bit" or more on all items of the Preparation for Decision Making Scale and had seemingly less decisional conflict than 21 parents who did not. Twelve directors rated it highly for clinical sensibility and sensitivity.
The LTV booklet was rigorously developed and favorably evaluated. It offers a resource to improve patient/family knowledge, supplement shared decision-making, and reduce decisional conflict around LTV decisions. Future studies should validate it in other settings and further study its effectiveness.
为了向正在决定是否为孩子启动长期通气（LTV）的家庭提供易于理解、统一、全面且平衡的信息，我们寻求开发并验证一种新的信息资源。
我们遵循了渥太华决策支持框架。此前，我们对 44 名普通人和 15 名专业利益相关者进行了访谈，并查阅了已发表的文献，这些内容为小册子提供了素材。小册子的迭代版本经过了六名面临决策的家长和五名儿科重症监护医生的认知测试。十名面临决策的家长使用决策准备量表评估了小册子，并报告了他们的决策冲突，然后将其与未阅读小册子的 21 名家长的冲突进行对比，使用决策冲突量表进行对比。12 名家庭通气计划主任使用自行设计的六分量表评估了小册子的临床敏感性和灵敏度，使用的是自我设计的六分量表。数据以摘要统计的形式呈现。
这本有插图的小册子（阅读水平为 6 年级）有九个关于慢性呼吸衰竭和侵入性及非侵入性 LTV 的主题部分，包括放弃 LTV 的选项。阅读小册子的十名家长在决策准备量表的所有项目上都评价其“帮助很大”或更多，并且与 21 名未阅读小册子的家长相比，他们的决策冲突似乎更少。12 名主任对小册子的临床敏感性和灵敏度评价很高。
LTV 小册子经过了严格的开发和评估。它提供了一种资源，可以提高患者/家庭的知识水平，补充共同决策，并减少围绕 LTV 决策的决策冲突。未来的研究应该在其他环境中验证它，并进一步研究其效果。
