Hauser Robert A, Russ Hermann, Haeger Doris-Anita, Bruguiere-Fontenille Michel, Müller Thomas, Wenning Gregor K
Parkinson's Disease and Movement Disorders Center, University of South Florida and Tampa General Healthcare, Tampa, FL 33606, USA.
Clin Neuropharmacol. 2006 Nov-Dec;29(6):322-30. doi: 10.1097/01.WNF.0000229546.81245.7F.
To evaluate patient perceptions of a new home diary designed to assess the duration and severity of dyskinesia in patients with Parkinson disease (PD) and to investigate whether the use of a training video and pictograms aids patient understanding of PD terminology.
Fifty advanced PD patients (Hoehn and Yahr stage 2.5-4.0; dyskinesia for >25% of the waking day) from the United States (n = 18), France (n = 12), and Germany (n = 20) were allocated alternately to 1 of 2 groups and shown a training video either with pictograms or without pictograms. The video explained the functional states "asleep," "OFF," "ON without dyskinesia," and "ON with dyskinesia," and how to complete the diary. Patients were given the corresponding version of the diary with or without pictograms to complete over a 24-hour period. Patients then participated in a second interview in which they were shown the alternate version of the video and diary for discussion only.
Almost 95% of patients (47/50) reported that the video helped them to understand and clarify terms. Most patients [39/50 (78%)] preferred the diary with pictograms, but there was no evidence that pictograms improved the accuracy of diary completion. Overall, 80% of patients (40/50) completed the diaries correctly. Incorrect diary completion was usually because of confusion about the different functional states.
Patients perceive diaries with pictograms as more helpful than those with words alone. Videos, in the patients' primary language, are considered valuable training aids that help patients complete daily diaries.
评估患者对一种旨在评估帕金森病（PD）患者异动症持续时间和严重程度的新型家庭日记的看法，并调查使用培训视频和象形图是否有助于患者理解PD术语。
来自美国（n = 18）、法国（n = 12）和德国（n = 20）的50例晚期PD患者（Hoehn和Yahr分期2.5 - 4.0；清醒日异动症时间>25%）被交替分配到2组中的1组，并观看有象形图或没有象形图的培训视频。该视频解释了“睡着”“关期”“无异动症开期”和“有异动症开期”等功能状态，以及如何填写日记。患者被给予相应版本的有或没有象形图的日记，在24小时内完成填写。然后患者参加第二次访谈，在访谈中他们观看视频和日记的另一个版本，仅用于讨论。
近95%的患者（47/50）报告称视频帮助他们理解和澄清了术语。大多数患者[39/50（78%）]更喜欢有象形图的日记，但没有证据表明象形图提高了日记填写的准确性。总体而言，80%的患者（40/50）正确完成了日记。日记填写错误通常是因为对不同功能状态的混淆。
患者认为有象形图的日记比只有文字的日记更有帮助。用患者母语制作的视频被认为是有价值的培训辅助工具，有助于患者完成每日日记。
