Galushko Maren, Golla Heidrun, Strupp Julia, Karbach Ute, Kaiser Claudia, Ernstmann Nicole, Pfaff Holger, Ostgathe Christoph, Voltz Raymond
1 Department of Palliative Medicine, University Hospital , Cologne, Germany .
J Palliat Med. 2014 Mar;17(3):274-81. doi: 10.1089/jpm.2013.0497. Epub 2014 Feb 14.
The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general.
The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS.
The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients self-reporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis.
Unmet needs were identified in the main categories "support of family and friends," "health care services," "managing everyday life," and "maintaining biographical continuity." Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated.
To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professional-patient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.
很少有研究调查多发性硬化症（MS）患者中那些感觉受到严重影响的患者的需求。然而，在改善护理之前，这是必须了解的重要信息，包括在有帮助的情况下增加姑息治疗（PC）服务。由于目前尚不清楚该患者群体应在何时开始接受专科姑息治疗，本研究主要关注总体需求。
探讨感觉受到严重影响的MS患者主观上未得到满足的需求。
本研究采用定性横断面方法进行需求评估。招募了15名自述感觉受到严重影响的MS患者，采用目的抽样和便利抽样相结合的方法进行访谈（其中5名患者有亲属陪同）。访谈进行录音并逐字转录，随后进行定性内容分析。
在“家人和朋友的支持”、“医疗保健服务”、“日常生活管理”和“保持生活连续性”等主要类别中发现了未满足的需求。患者表示希望从家人那里得到更多支持，并希望被视为独特的个体。他们认为医患关系和服务协调存在严重不足。对于病情更严重且社会融合度较低的患者，未满足需求的表达有所减少。
为满足严重受影响的MS患者未满足的需求，需要改善医疗保健服务并将其与现有的PC服务相联系。需要特别关注建立支持性的专业 - 患者关系。患者应能够获得多专业服务，同时让亲属参与进来。所有服务都应采用个性化方法，提供满足需求的支持。
