RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

BackgroundParkinson’s disease (PD) is a progressive degenerative disease without curative treatment perspectives. Even when palliative care for people with PD seems to be beneficial, the need for palliative care is often not timely recognized.AimOur aim was to develop a tool that can help healthcare professionals in timely identifying palliative care needs in people with PD.DesignWe used a mixed-methods design, including individual and focus group interviews and a three-round modified Delphi study with healthcare professionals from a multidisciplinary field.ResultsData from the interviews suggested two distinct moments in the progressive PD trajectory: 1) an ultimate moment to initiate Advance Care Planning (ACP); and 2) the actual start of the palliative phase. During the Delphi process, six indicators for ACP were identified, such as presence of frequent falls and first unplanned hospital admission. The start of the palliative phase involved four indicators: 1) personal goals have started to focus on maximization of comfort; 2) care needs have changed; 3) PD drug treatment has become less effective or an increasingly complex regime of drug treatments is needed; and 4) specific PD-symptoms or complications have appeared, such as significant weight loss, recurrent infections, or progressive dysphagia. Indicators for both moments are included in the RADboud indicators for PAlliative Care Needs in Parkinson’s Disease (RADPAC-PD) tool.ConclusionThe RADPAC-PD may support healthcare professionals in timely initiating palliative care for persons with PD. Identification of one or more indicators can mark the need for ACP or the palliative phase. We expect that applying the RADPAC-PD, for example on an annual basis throughout the PD trajectory, can facilitate identification of the palliative phase in PD patients in daily practice. However, further prospective research is needed on the implementation of the RADPAC-PD.

背景：帕金森病（Parkinson’s disease, PD）是一种尚无治愈性治疗前景的进行性退行性疾病。尽管针对帕金森病患者的姑息治疗（palliative care）看似有益，但医护人员往往未能及时识别患者的姑息治疗需求。
研究目的：本研究旨在开发一款工具，帮助医护人员及时识别帕金森病患者的姑息治疗需求。
研究设计：本研究采用混合研究设计，纳入个体访谈与焦点小组访谈，并联合一项针对多学科领域医护人员的三轮改良德尔菲（modified Delphi study）研究。
研究结果：访谈数据显示，帕金森病的疾病进展轨迹中存在两个关键节点：1）启动预先照护计划（Advance Care Planning, ACP）的最佳时机；2）姑息治疗阶段的实际启动节点。在德尔菲研究过程中，共确定6项预先照护计划相关指征，包括频繁跌倒史与首次非计划住院事件。姑息治疗阶段启动的指征则有4项：1）个人目标开始转向以舒适度最大化为核心；2）照护需求发生改变；3）帕金森病药物治疗效果下降，或需愈发复杂的药物治疗方案；4）出现特异性帕金森病相关症状或并发症，例如显著体重下降、反复感染或进行性吞咽困难。上述两类节点的指征均被纳入帕金森病姑息治疗需求拉德堡德指征工具（RADboud indicators for PAlliative Care Needs in Parkinson’s Disease, RADPAC-PD）。
研究结论：RADPAC-PD工具可辅助医护人员及时为帕金森病患者启动姑息治疗。通过识别一项或多项指征，即可判定患者是否需要启动预先照护计划或已进入姑息治疗阶段。我们预期，在帕金森病患者的疾病全程中（例如每年开展一次评估）应用该工具，可在临床实践中助力医护人员及时识别患者的姑息治疗阶段。不过，未来仍需开展前瞻性研究以验证RADPAC-PD工具的临床落地效果。