Salinas Meagen R, Chambers Elizabeth J, Ho Travis, Khemani Pravin, Olson DaiWai M, Stutzman Sonja, Chitnis Shilpa
University of Texas Southwestern Medical Center, Dallas, TX, USA.
Neurology Section, VA North Texas Health Care System, Medical Service, Dallas, TX, USA.
Clin Park Relat Disord. 2020 Jan 16;3:100038. doi: 10.1016/j.prdoa.2020.100038. eCollection 2020.
As the 2nd most common neurodegenerative disorder, Parkinson's disease (PD) affects over 1 million Americans. Treatment is complex and may include pharmacotherapy, rehabilitative measures, and surgical intervention. A comprehensive understanding of the patient's perceptions about PD is a vital step towards improving health literacy and clinical outcomes.
KnowPD is a web-based survey with Likert responses for a cross-sectional, nonrandomized study to assess patients' knowledge of PD symptoms, medications, deep brain stimulation (DBS), rehabilitation, and other factors relevant to disease management.
Of the 98 subjects surveyed, 90% agreed they had sufficient knowledge of PD. However, in this cohort, 82% incorrectly believed levodopa stops working as the disease progresses, 77% erroneously thought DBS improves balance and reduces falls, and, <50% could answer specific questions regarding the dosing of levodopa despite over 75% reporting managing their own medications. A majority of patients (84%) believed it was possible to live well with PD, correlating with their self-reported knowledge of the disease. Finally, patients selected electronic video (13.7%) and reading (20.0%) material, yearly symposia (20.0%), and lunch lectures (28.4%) as their preferred method of information delivery.
Misconceptions are prevalent among PD patients, and these appear to be unrelated to gender, provider type, or education level. Identification and characterization of this knowledge gap is vital towards allocating patient education resources, and the findings described herein will form the basis for effective educational interventions.
作为第二常见的神经退行性疾病，帕金森病（PD）影响着超过100万美国人。治疗复杂，可能包括药物治疗、康复措施和手术干预。全面了解患者对帕金森病的看法是提高健康素养和临床疗效的关键一步。
“了解帕金森病”（KnowPD）是一项基于网络的调查，采用李克特量表回答方式，用于一项横断面、非随机研究，以评估患者对帕金森病症状、药物、深部脑刺激（DBS）、康复及其他与疾病管理相关因素的了解情况。
在接受调查的98名受试者中，90%的人表示他们对帕金森病有足够的了解。然而，在这个队列中，82%的人错误地认为随着疾病进展左旋多巴会失效，77%的人错误地认为深部脑刺激能改善平衡并减少跌倒，并且，尽管超过75%的人报告自行管理药物，但只有不到50%的人能够回答关于左旋多巴剂量的具体问题。大多数患者（84%）认为帕金森病患者有可能过上良好的生活，这与他们自我报告的疾病知识相关。最后，患者选择电子视频（13.7%）和阅读材料（20.0%）、年度研讨会（20.0%）以及午餐讲座（28.4%）作为他们首选的信息传播方式。
帕金森病患者中普遍存在误解，而且这些误解似乎与性别、医疗服务提供者类型或教育水平无关。识别和描述这一知识差距对于分配患者教育资源至关重要，本文所述的研究结果将为有效的教育干预奠定基础。
