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帕金森病患者及医生对疾病管理的认知:一项基于美国的多中心调查结果

Patient and physician perceptions of disease management in Parkinson's disease: results from a US-based multicenter survey.

作者信息

Hermanowicz Neal, Castillo-Shell Michelle, McMean Angela, Fishman Jesse, D'Souza Joseph

机构信息

Movement Disorders Program and Department of Neurology, University of California-Irvine, Irvine, CA, USA.

UCB Pharma, Smyrna, GA, USA.

出版信息

Neuropsychiatr Dis Treat. 2019 May 30;15:1487-1495. doi: 10.2147/NDT.S196930. eCollection 2019.

Abstract

Clinical care for patients with Parkinson's disease (PD) is complex, and disconnect may exist between patient and physician perceptions of treatment, disease awareness, and impact on quality of life (QoL). Relatively few studies have analyzed patient and physician perspectives of disease management concurrently, and even fewer have compared responses between corresponding patients and their physicians. This study aimed to characterize these aspects and identify opportunities to improve alignment. This cross-sectional study used an online survey and chart review. Participating physicians completed a profiling survey, followed by patient record forms (PRFs) for their next five patients with PD. Patients completed paper questionnaires. PRFs were matched with patient questionnaires, and patient and physician responses compared. Of 107 participating physicians, 70 completed 350 PRFs. Patients completed 71 questionnaires; 66 were matched to PRFs. From a physician perspective, there was alignment between the motor symptoms that were most bothersome for patients and those that were most discussed (physicians felt tremor was most bothersome for most patients [71%]; 77% of physicians included tremor among top three most discussed), but disconnect between the most bothersome and most discussed nonmotor symptoms (physicians felt fatigue was most bothersome for most patients [35%]; cognitive impairment was the most discussed nonmotor symptom, with 52% of physicians including it in top three most discussed). Patients and physicians reported moderate satisfaction with current PD medication. Patients considered form of delivery more important than did physicians. Physicians showed a strong level of awareness of PD's impact on patient QoL, although validated QoL instruments were not widely used. Physicians were more confident than patients about patients' awareness of support resources for patients with PD. Nonmotor symptoms, form of medication delivery, and awareness of support services are areas where PD physician and patient alignment could be increased to improve outcomes.

摘要

帕金森病(PD)患者的临床护理较为复杂,患者与医生在治疗认知、疾病认知以及对生活质量(QoL)的影响方面可能存在脱节。相对较少的研究同时分析患者和医生对疾病管理的看法,更少的研究比较相应患者与其医生之间的回答。本研究旨在描述这些方面并确定改善一致性的机会。这项横断面研究采用了在线调查和病历审查。参与的医生完成一份概况调查,随后为其接下来的五名PD患者填写患者记录表(PRF)。患者完成纸质问卷。将PRF与患者问卷进行匹配,并比较患者和医生的回答。在107名参与的医生中,70名完成了350份PRF。患者完成了71份问卷;其中66份与PRF匹配。从医生的角度来看,患者最困扰的运动症状与讨论最多的运动症状之间存在一致性(医生认为震颤是大多数患者最困扰的症状[71%];77%的医生将震颤列为讨论最多的前三种症状之一),但最困扰的非运动症状与讨论最多的非运动症状之间存在脱节(医生认为疲劳是大多数患者最困扰的症状[35%];认知障碍是讨论最多的非运动症状,52%的医生将其列为讨论最多的前三种症状之一)。患者和医生对当前的PD药物治疗表示中度满意。患者比医生更看重给药形式。医生对PD对患者QoL的影响有较高的认知水平,尽管未广泛使用经过验证的QoL工具。医生比患者更有信心认为患者了解PD患者的支持资源。非运动症状、药物给药形式以及对支持服务的认知是可以提高PD医生与患者的一致性以改善治疗结果的领域。

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