Bientzle Martina, Kimmerle Joachim, Eggeling Marie, Cebi Idil, Weiss Daniel, Gharabaghi Alireza
Leibniz-Institut für Wissensmedien, Tübingen, Germany.
Department of Psychology, University of Tübingen, Tübingen, Germany.
JMIR Res Protoc. 2020 Jul 14;9(7):e17482. doi: 10.2196/17482.
Shared decision making is particularly important in situations with different treatment alternatives. For the treatment of idiopathic Parkinson disease, both pharmacological and surgical approaches can be applied.
In this research project, a series of studies will be conducted to investigate how decision aids for patients with idiopathic Parkinson disease should be designed in order to support the decision-making process.
In Study 1a, qualitative interviews will be conducted to determine which needs frequently occur for patients with idiopathic Parkinson disease. In Study 1b, the identified needs will then be rated for personal relevance by an independent group of patients in an online survey. In Study 2, a randomized controlled trial will be used to pretest different decision aids in a sample group of people who do not have a medical background and who do not have Parkinson disease. In Study 3, a randomized controlled trial will be used to investigate the effect of the decision aids that had been evaluated as positive in Study 2 with patients who have idiopathic Parkinson disease.
This series of studies received ethical approval in January 2020. As of June 2020, data collection for Study 1a has started, and it is estimated that Studies 1a, 1b, 2, and 3 will take approximately 4, 4, 6, and 6 months to complete, respectively. It is planned to present the results and analyses at international conferences and to submit the results to peer-reviewed journals for publication, once the studies have been completed. The findings will also be shared with clinicians and patients through presentations at information events.
This series of studies is intended to result in an evidence-based decision aid for patients with idiopathic Parkinson disease in order to support the informed and reflected shared decision-making process. We further intend to contribute to a deeper understanding of the individual preferences of patients with idiopathic Parkinson disease and the impact of those preferences on treatment decisions.
在存在不同治疗方案的情况下，共同决策尤为重要。对于特发性帕金森病的治疗，药理学方法和手术方法均可应用。
在本研究项目中，将开展一系列研究，以调查应如何设计特发性帕金森病患者的决策辅助工具，以支持决策过程。
在研究1a中，将进行定性访谈，以确定特发性帕金森病患者经常出现的需求。在研究1b中，一组独立的患者将通过在线调查对已确定的需求的个人相关性进行评分。在研究2中，将采用随机对照试验，在一组没有医学背景且没有帕金森病的人群中对不同的决策辅助工具进行预测试。在研究3中，将采用随机对照试验，调查在研究2中被评估为有效的决策辅助工具对特发性帕金森病患者的效果。
这一系列研究于2020年1月获得伦理批准。截至2020年6月，研究1a的数据收集工作已经开始，预计研究1a、1b、2和3分别需要约4、4、6和6个月完成。计划在国际会议上展示研究结果和分析，并在研究完成后将结果提交给同行评审期刊发表。研究结果还将通过在信息活动中的报告与临床医生和患者分享。
这一系列研究旨在为特发性帕金森病患者提供基于证据的决策辅助工具，以支持明智且经过深思熟虑的共同决策过程。我们还打算更深入地了解特发性帕金森病患者的个人偏好以及这些偏好对治疗决策的影响。
