Department of Neurology, Donders Institute for Brain, Cognition and Behavior, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands.
Parkinsonism Relat Disord. 2011 Jun;17(5):360-4. doi: 10.1016/j.parkreldis.2011.02.012. Epub 2011 Mar 10.
Quality of care is becoming increasingly important in the field of movement disorders. Patient-centeredness is a crucial element of quality of care, but has thus far received limited attention regarding the treatment of movement disorder syndromes. As a first step towards patient-centered care in Parkinson's disease (PD), we explored the unmet needs of PD patients and their informal caregivers.
Eight focus group discussions involving 40 PD patients (mean age 62 years, Hoehn & Yahr stage 1-3) and 20 informal caregivers (mean age 63 years) were organized to explore the experiences in relation to patient-centered care. The key elements of patient-centeredness - as defined by the Picker Institute and the World Health Organization - were used as a framework for discussion and qualitative analysis.
Patients and informal caregivers desired more emotional support from healthcare professionals, and wanted more active involvement in clinical decision making, but currently lacked sufficient information to do so. Participants also missed the tools to find professionals with PD expertise. Finally, they identified a lack of multidisciplinary collaboration as a major bottleneck in the current healthcare system.
We identified various unmet needs among PD patients and informal caregivers. These joint experiences represent a disease-specific model of patient-centeredness for PD, which can assist healthcare professionals in implementing patient-centered care tailored to the preferences of each individual patient. The present findings will be used to construct a patient-centeredness questionnaire for PD that will clarify the quality of care from a patient's perspective.
在运动障碍领域，医疗质量变得越来越重要。以患者为中心是医疗质量的关键要素，但迄今为止，针对运动障碍综合征的治疗，这一要素受到的关注有限。作为迈向帕金森病（PD）以患者为中心护理的第一步，我们探讨了 PD 患者及其非正式照护者的未满足需求。
组织了 8 次焦点小组讨论，共涉及 40 名 PD 患者（平均年龄 62 岁，Hoehn & Yahr 分期 1-3 期）和 20 名非正式照护者（平均年龄 63 岁），以探讨与以患者为中心的护理相关的经验。以皮克研究所和世界卫生组织定义的以患者为中心的关键要素为框架进行讨论和定性分析。
患者和非正式照护者希望医护人员提供更多的情感支持，并希望更积极地参与临床决策，但目前缺乏足够的信息来做到这一点。参与者还错过了寻找 PD 专业知识的专业人员的工具。最后，他们发现当前医疗体系缺乏多学科协作是一个主要瓶颈。
我们确定了 PD 患者和非正式照护者的各种未满足需求。这些共同的经验代表了 PD 特定的以患者为中心模式，可以帮助医疗保健专业人员实施针对每个患者个体偏好定制的以患者为中心的护理。目前的研究结果将用于构建 PD 以患者为中心的问卷，该问卷将从患者的角度阐明护理质量。
