Interdisciplinary palliative care for people with advanced Parkinson's disease: a view from the home
Interdisciplinary palliative care for people with advanced Parkinson's disease: a view from the home
复制标题
DOI：
10.21037/apm.2019.09.12
复制
发表时间：
2020-02-01
影响因子：
--
通讯作者：
Chodosh, Joshua
中科院分区：
文献类型：
--
作者：
Fleisher, Jori E.;Klostermann, Ellen C.;Chodosh, Joshua
背景：晚期帕金森病（PD）是一种具有运动和非运动症状的多维神经退行性疾病，可导致残疾增加和生活质量下降。随着病情的发展，患者可能宅在家中，与神经系统护理疏远，带来可怕的后果。我们描述了日益增加的流行病学负担和个体风险所面临的姑息期PD患者和他们的照顾者。方法：为了降低这些风险，我们设计并迭代了两种跨学科家访模式，以保持护理的连续性，并阐明了这一人群未满足的需求和面临的护理障碍。我们详细描述了这两种模型，包括在初始模型中实现的可行性和以患者为中心的结果的数据，以及正在进行的扩展模型中参与者的基线特征。最后，我们说明的范围和共同主题，这种姑息治疗知情家访与两个案例。结果：试点模型涉及超过380次就诊，109名个体患者。在这些患者中，PD的严重程度在统一帕金森病评定量表（UPDRS）上每年恶化近12点，而生活质量却没有相应的下降。在对该模型进行的第二次迭代研究中，52对患者-护理人员已经完成了首次访问，其中44%的人被诊断为痴呆症，大多数人需要辅助设备或卧床不起。两个案例突出了彻底的药物和解和家庭安全评估在这类患者的综合评估和管理中的关键重要性。结论：随着我们人口的老龄化，治疗方法的增加，以及患有晚期PD和相关疾病的个体数量的增加，认识和解决这些患者和家庭的姑息治疗需求也势在必行。对许多人来说，家可能是一个可行的，也许是最佳的护理场所。
Background: Advanced Parkinson's disease (PD) is a multidimensional neurodegenerative condition with motor and non-motor symptoms contributing to increasing disability and decreasing quality of life. As the disease progresses, patients may become homebound and estranged from neurological care, with dire consequences. We describe the increasing epidemiologic burden of and individual risks faced by patients with palliative-stage PD and their caregivers.Methods: With the aim of mitigating these risks, we designed and iterated two models of interdisciplinary home visits to maintain continuity of care and illuminate the unmet needs and barriers to care faced by this population. We describe both models in detail, with data on feasibility and patient-centered outcomes achieved in the initial model, and baseline characteristics of participants in the ongoing expanded model. Finally, we illustrate the scope and common themes of such palliative care-informed home visits with two cases.Results: The pilot model involved over 380 visits with 109 individual patients. Among those patients, PD severity worsened by nearly 12 points annually on the Unified Parkinson's Disease Rating Scale (UPDRS), without a corresponding decline in quality of life. In an ongoing study of the second iteration of the model, 52 patient-caregiver dyads have completed their initial visit, with 44% bearing a diagnosis of dementia and the majority requiring an assistive device or being bedbound. Two cases highlight the critical importance of thorough medication reconciliation and home safety assessment in the comprehensive evaluation and management of such patients.Conclusions: As our population ages, therapies increase, and the number of individuals living with advanced PD and related disorders grows, so too does the imperative to recognize and address the palliative care needs of such patients and families. For many, home may be a viable, and perhaps optimal, site for this care.