Feys Peter, Giovannoni Gavin, Dijsselbloem Nathalie, Centonze Diego, Eelen Piet, Lykke Andersen Stine
REVAL Rehabilitation Research Centre, BIOMED Biomedical Research Institute, Faculty of Medicine and Life Sciences, University of Hasselt, Diepenbeek, Belgium
Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University London, London, UK.
Mult Scler. 2016 Aug;22(2 Suppl):34-46. doi: 10.1177/1352458516650741.
Multiple sclerosis (MS) is a progressive disease associated with a large variety of symptoms and changing patients' needs during the disease course. In order to provide appropriate care in every disease stage and let patients live their lives to the full, a multi-disciplinary approach and patient activation is needed.
To summarise the multi-disciplinary perspective of MS, with focus on the organisation of a multi-disciplinary care team and possibilities to support patient activation.
This review reflects the content of the presentations, audience polling results and discussions on the multi-disciplinary perspective of MS during the second Pan-European MS Multi-stakeholder Colloquium.
In many countries, the neurologist with or without the support of an MS nurse is responsible for the long-term care of MS patients. When needed, they should refer to other (non-)medical specialists. However, the patient should be empowered as well to manage his/her disease and to implement a physically active lifestyle in order to improve treatment outcomes and quality of life.
To create equal access to care for MS patients across Europe, evidence-based standards of care, symptom self-monitoring tools and educational programmes for patients and healthcare professionals including non-medical treatment strategies should be developed at the European level.
多发性硬化症(MS)是一种渐进性疾病,在疾病过程中伴有多种症状且患者需求不断变化。为了在每个疾病阶段提供适当的护理并让患者充分享受生活,需要采取多学科方法并促进患者积极参与。
总结MS的多学科观点,重点关注多学科护理团队的组织以及支持患者积极参与的可能性。
本综述反映了第二届泛欧MS多利益相关方研讨会上关于MS多学科观点的演讲内容、观众投票结果和讨论情况。
在许多国家,有或没有MS护士支持的神经科医生负责MS患者的长期护理。必要时,他们应转诊至其他(非)医学专科医生处。然而,患者也应被赋予管理自身疾病的能力,并践行积极的生活方式,以改善治疗效果和生活质量。
为在欧洲实现MS患者平等的就医机会,应在欧洲层面制定基于证据的护理标准、症状自我监测工具以及针对患者和医疗保健专业人员的教育计划,包括非药物治疗策略。