Wendebourg Maria Janina, Feddersen Lena Katharina, Lau Stephanie, Köpke Sascha, Moss-Morris Rona, Heesen Christoph, Pöttgen Jana
Institute of Neuroimmunology and Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany (MJW, LKF, SL, CH, JP); Nursing Research Unit, Institute of Social Medicine, University of Lübeck, Lübeck, Germany (SK); and Health Psychology Section, Institute of Psychiatry, King's College London, London, UK (RM-M).
Int J MS Care. 2016 May-Jun;18(3):129-37. doi: 10.7224/1537-2073.2014-105.
BACKGROUND: Multiple sclerosis (MS) is an inflammatory and neurodegenerative disease of the central nervous system. Fatigue is a common and disabling symptom, often causing decreased quality of life, social withdrawal, and unemployment. We developed and studied the feasibility of a cognitive-behavioral group intervention to manage fatigue in MS. We aimed to integrate the concepts of cognitive-behavioral therapy and evidence-based patient information. METHODS: We conducted patient interviews and a focus group to assess patients' interest in and need for fatigue self-management training and developed the program accordingly. The program consists of six 90-minute modules, which were structured with the use of moderation cards, helping to guarantee treatment fidelity. The program was tested on three pilot groups (N = 16) in a rehabilitation center. Fatigue, depression, and coping self-efficacy were assessed at baseline and after the intervention. Acceptance and general satisfaction with the program were also evaluated. RESULTS: Patient interviews elicited different characteristics of fatigue, suggesting that patients had different requirements. The program was very acceptable to patients. Pre-post assessments of the pilot study showed significantly improved scores on the Coping Self-Efficacy Scale (P = .013) but not on the Fatigue Scale for Motor and Cognitive Functions and the 30-item Inventory of Depressive Symptomatology. CONCLUSIONS: These preliminary results suggest that this program is a feasible cognitive-behavioral group training program that may improve coping self-efficacy and has the potential to subsequently reduce fatigue. The next step is evaluation of the program in a randomized controlled trial.
背景:多发性硬化症(MS)是一种中枢神经系统的炎症性和神经退行性疾病。疲劳是一种常见且使人衰弱的症状,常导致生活质量下降、社交退缩和失业。我们开发并研究了一种认知行为团体干预措施来管理MS患者的疲劳。我们旨在整合认知行为疗法的概念和基于证据的患者信息。 方法:我们进行了患者访谈和焦点小组讨论,以评估患者对疲劳自我管理培训的兴趣和需求,并据此制定了该项目。该项目由六个90分钟的模块组成,使用调节卡进行结构化设计,有助于确保治疗的保真度。该项目在一家康复中心的三个试点组(N = 16)中进行了测试。在基线和干预后评估疲劳、抑郁和应对自我效能感。还评估了患者对该项目的接受程度和总体满意度。 结果:患者访谈揭示了疲劳的不同特征,表明患者有不同的需求。该项目很受患者欢迎。试点研究的前后评估显示,应对自我效能量表的得分显著提高(P = .013),但运动和认知功能疲劳量表以及30项抑郁症状量表的得分没有提高。 结论:这些初步结果表明,该项目是一个可行的认知行为团体培训项目,可能会提高应对自我效能感,并有可能随后减轻疲劳。下一步是在随机对照试验中对该项目进行评估。
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