Knies Andrea K, Golla Heidrun, Strupp Julia, Galushko Maren, Schipper Sabine, Voltz Raymond
Department of Palliative Medicine,University Hospital,Cologne,Germany.
German Multiple Sclerosis Society,State Association,North Rhine-Westphalia,Germany.
Palliat Support Care. 2015 Aug;13(4):1071-8. doi: 10.1017/S1478951514001035. Epub 2014 Sep 5.
Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study.
The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care).
During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers.
Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.
研究结果表明，受多发性硬化症严重影响的患者可从姑息治疗中受益。我们的目标是：（1）为受多发性硬化症严重影响的患者及其护理人员设立一条姑息治疗咨询热线，以便他们能够获得姑息治疗；（2）通过一项试点研究评估其初步可行性。
该热线是与德国多发性硬化症协会当地州级分会合作设计的，设计依据是文献综述。热线的初始研究地点是德国科隆和波恩市的广大地区。通过德国多发性硬化症协会出版的一本杂志以及分发给当地医疗服务提供者的传单来宣传该热线。通话采用半结构化访谈指南进行，并通过标准化病例报告表进行记录。评估可行性的措施包括定量指标（如通话次数）和定性指标（如姑息治疗的资格标准）。
在试点的第一年，热线接到了18个电话。约15名来电者被纳入分析，其中15人中有10人因医疗特征、护理条件、护理人员压力以及对死亡和临终的担忧等标准而被认为符合姑息治疗条件。可为所有10名来电者提供姑息治疗服务。
基于我们的试点可行性研究，该热线对于受多发性硬化症严重影响的患者及其护理人员来说似乎是一项有价值的服务，有助于他们获取有关姑息治疗的信息并获得姑息治疗服务。德国多发性硬化症协会将提供一笔赠款，使其在全国范围内推广。需要提高对该热线的认知度，以吸引并支持大量新的来电者。
