Helland Caroline Bruun, Holmøy Trygve, Gulbrandsen Pål
Department of Neurology (CBH) and HøKH Research Centre (PG), Akershus University Hospital, Lørenskog, Norway; and Institute of Clinical Medicine, Campus Ahus, University of Oslo, Norway (TH).
Int J MS Care. 2015 May-Jun;17(3):122-9. doi: 10.7224/1537-2073.2014-007.
Studies have shown the positive effects of multidisciplinary rehabilitation on disability and health-related quality of life in multiple sclerosis (MS). However, many patients do not seek such treatment, even if it is available free of charge. The aim of this study was to identify facilitators and barriers related to use of such treatment options.
Five focus group interviews with 27 MS patients were conducted. Three groups included patients who had been admitted to a multidisciplinary MS rehabilitation institution, and two groups included outpatients of a university hospital who had not applied for specialized rehabilitation. Interviews were audiotaped and transcribed, and were analyzed qualitatively by means of a modified form of systematic text condensation.
Important factors influencing the use of an MS rehabilitation service were 1) the availability and suitability of initial information about the disease and the service, 2) assumptions and expectations about such a service, and 3) practical barriers in the patient's life. The prospect of having a retreat from work and family was described as a motivational factor. Lack of reorientation after diagnosis, fears and perceptions of being labeled as an MS patient, or having information overload and being confronted with disabled individuals were identified as barriers.
Communication skills, including information-giving skills, of neurologists in relation to newly diagnosed MS patients need improvement. Rehabilitation programs for MS patients should include stays of different durations and purposes to fit patients' needs. Health-care authorities should take measures to secure equal access to information about rehabilitation options across institutions and practicing physicians.
研究表明，多学科康复对多发性硬化症（MS）患者的残疾状况及与健康相关的生活质量具有积极影响。然而，即便这种治疗免费提供，许多患者仍未寻求此类治疗。本研究旨在确定与使用此类治疗方案相关的促进因素和障碍。
对27名MS患者进行了五次焦点小组访谈。其中三个小组的患者曾入住多学科MS康复机构，另外两个小组的患者是未申请专门康复治疗的大学医院门诊患者。访谈进行了录音和转录，并通过一种改良的系统文本浓缩形式进行定性分析。
影响MS康复服务使用的重要因素包括：1）关于疾病和服务的初始信息的可获取性和适用性；2）对此类服务的假设和期望；3）患者生活中的实际障碍。从工作和家庭中暂时解脱出来的前景被描述为一个激励因素。诊断后缺乏重新定位、害怕被贴上MS患者的标签以及对患者的看法、信息过载以及接触到残疾个体等被确定为障碍。
神经科医生与新诊断的MS患者沟通的技能，包括提供信息的技能，需要改进。针对MS患者的康复计划应包括不同时长和目的的住院安排，以满足患者需求。卫生保健当局应采取措施确保各机构和执业医生能平等获取有关康复选择的信息。
