Jordan Sarah R, Kluger Benzi, Ayele Roman, Brungardt Adreanne, Hall Anne, Jones Jacqueline, Katz Maya, Miyasaki Janis M, Lum Hillary D
Division of Geriatric Medicine, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Departments of Neurology and Medicine, University of Rochester Medical Center, Rochester, NY, USA.
Ann Palliat Med. 2020 Feb;9(Suppl 1):S63-S74. doi: 10.21037/apm.2019.09.10. Epub 2020 Feb 6.
Living with Parkinson disease (PD) is complicated by an unpredictable disease course which can delay planning for future needs. This study explores patient and care partner needs related to future planning using a palliative care framework with physical, psychological, social, cultural, end-of-life, and ethical aspects of care in PD to guide analysis.
Secondary analysis of patient and care partner interviews from a randomized clinical trial comparing interdisciplinary outpatient palliative care versus standard care for individuals with PD and care partners in an academic setting. Sixty participants were interviewed (30 patients and 30 care partners) about needs related to future planning. Team-based thematic analysis was used to identify key themes.
Many care partners and patients living with PD described a desire for information about what to expect and how to plan for the future. Participants posed multiple questions about PD progression and devised the metaphor of a "roadmap" as a guide for decision making and planning. When exploring the concept of a PD roadmap, five themes emerged: (I) desire for a comprehensive tool for future planning, such as a roadmap, (II) care partner preferences for specific future planning, (III) PD-related life changes as opportunity for future planning and decision-making, (IV) cues from family, peers, and medical professionals about "location" on the roadmap, and (V) opportunities and challenges to integrating a PD roadmap into patient-centered care.
Patients and care partners described key needs related to future planning that can inform a comprehensive roadmap to assist with education, communication, and decision making. A roadmap tool can promote individualized anticipatory guidance and multidimensional shared decision-making discussions between patients, care partners, and the healthcare team related to PD progression.
帕金森病（PD）患者的生活因疾病进程不可预测而变得复杂，这可能会延迟对未来需求的规划。本研究使用姑息治疗框架，探讨与未来规划相关的患者和护理伙伴的需求，该框架涵盖了PD护理在身体、心理、社会、文化、临终和伦理方面的内容，以指导分析。
对一项随机临床试验中患者和护理伙伴访谈进行二次分析，该试验比较了学术环境中为PD患者及其护理伙伴提供的跨学科门诊姑息治疗与标准护理。就与未来规划相关的需求对60名参与者（30名患者和30名护理伙伴）进行了访谈。采用基于团队的主题分析来确定关键主题。
许多PD患者及其护理伙伴表示希望了解未来的预期情况以及如何进行规划。参与者提出了多个关于PD进展的问题，并设计了“路线图”这一比喻作为决策和规划的指南。在探讨PD路线图的概念时，出现了五个主题：（I）对未来规划综合工具（如路线图）的需求，（II）护理伙伴对特定未来规划的偏好，（III）与PD相关的生活变化作为未来规划和决策的机会，（IV）家人、同龄人及医疗专业人员关于路线图上“位置”的提示，以及（V）将PD路线图纳入以患者为中心护理的机会和挑战。
患者和护理伙伴描述了与未来规划相关的关键需求，这些需求可为全面的路线图提供信息，以协助教育、沟通和决策。路线图工具可促进个性化的预期指导以及患者、护理伙伴和医疗团队之间关于PD进展的多维度共同决策讨论。
