Department of Neurosurgery, Odense University Hospital, Kloevervaenget 47, Indgang 44, 46, 1. sal, DK-5000 Odense, Denmark.
Clinical Institute, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark.
Int J Environ Res Public Health. 2022 Jun 16;19(12):7396. doi: 10.3390/ijerph19127396.
When high-grade gliomas recur, patients, their families, and clinicians face difficult medical decisions. There is no curable treatment, and the treatment options all come with a risk of complications and adverse effects. The patients are often cognitively affected, and they need tailored decision support. The objective of this study was to develop a patient decision aid (PtDA) targeted at patients with recurrent high-grade gliomas. Based on existing knowledge and the International Patient Decision Aids Standards, the PtDA was developed through an iterative process. The PtDA was alpha-tested by potential users to assess its acceptability and usability. The development team comprised three clinicians, two patients, two family members, and a researcher. The fifth version of the PtDA was submitted to the alpha test. Eleven patients, nine family members, and eleven clinicians assessed the PtDA and found it acceptable. Three changes were made during the alpha test. Most participants perceived the PtDA to prepare patients for decision making and improve consultations. The involvement of potential users was emphasized during the development and alpha test process. The PtDA was assessed as useful and acceptable by patients, family members, and clinicians in the decision-making situation of recurrent high-grade glioma.
当高级别胶质瘤复发时，患者、家属和临床医生都会面临艰难的医疗决策。目前尚无治愈方法，且所有治疗方案都伴随着并发症和不良反应的风险。患者通常存在认知障碍，需要量身定制的决策支持。本研究旨在开发一种针对复发性高级别胶质瘤患者的患者决策辅助工具（PtDA）。基于现有知识和国际患者决策辅助工具标准，通过迭代过程开发了 PtDA。通过潜在用户的α测试评估其可接受性和可用性。开发团队由三名临床医生、两名患者、两名家属和一名研究人员组成。PtDA 的第五版提交了α测试。11 名患者、9 名家属和 11 名临床医生评估了 PtDA，并认为其可以接受。在α测试期间进行了三项更改。大多数参与者认为 PtDA 可以帮助患者做好决策准备并改善咨询。在开发和α测试过程中强调了潜在用户的参与。PtDA 在复发性高级别胶质瘤的决策情况下被患者、家属和临床医生评估为有用且可接受。
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