Rieckmann Peter, Boyko Alexey, Centonze Diego, Elovaara Irina, Giovannoni Gavin, Havrdová Eva, Hommes Otto, Kesselring Jurg, Kobelt Gisela, Langdon Dawn, LeLorier Jacques, Morrow Sarah A, Oreja-Guevara Celia, Schippling Sven, Thalheim Christoph, Thompson Heidi, Vermersch Patrick
Sozialstiftung Bamberg Hospital, Bamberg, Germany.
Moscow MS Centre, Russian State Research Medical University named by NI Pirogov, Moscow, Russia.
Mult Scler Relat Disord. 2015 May;4(3):202-18. doi: 10.1016/j.msard.2015.02.005. Epub 2015 Mar 2.
While advances in medicine, technology and healthcare services offer promises of longevity and improved quality of life (QoL), there is also increasing reliance on a patient׳s skills and motivation to optimize all the benefits available. Patient engagement in their own healthcare has been described as the 'blockbuster drug of the century'. In multiple sclerosis (MS), patient engagement is vital if outcomes for the patient, society and healthcare systems are to be optimized. The MS in the 21st Century Steering Group devised a set of themes that require action with regard to patient engagement in MS, namely: 1) setting and facilitating engagement by education and confidence-building; 2) increasing the importance placed on QoL and patient concerns through patient-reported outcomes (PROs); 3) providing credible sources of accurate information; 4) encouraging treatment adherence through engagement; and 5) empowering through a sense of responsibility. Group members independently researched and contributed examples of patient engagement strategies from several countries and examined interventions that have worked well in areas of patient engagement in MS, and other chronic illnesses. The group presents their perspective on these programs, discusses the barriers to achieving patient engagement, and suggests practical strategies for overcoming these barriers. With an understanding of the issues that influence patient engagement in MS, we can start to investigate ways to enhance engagement and subsequent health outcomes. Engaging patients involves a broad, multidisciplinary approach.
虽然医学、技术和医疗服务的进步为长寿和生活质量(QoL)的改善带来了希望,但人们对患者自身优化所有可用益处的技能和积极性的依赖也在增加。患者参与自身医疗保健被描述为“世纪重磅药物”。在多发性硬化症(MS)中,如果要优化患者、社会和医疗系统的结局,患者参与至关重要。21世纪MS指导小组制定了一系列主题,这些主题需要在患者参与MS方面采取行动,即:1)通过教育和建立信心来设定并促进参与;2)通过患者报告结局(PROs)提高对生活质量和患者关切的重视程度;3)提供可靠的准确信息来源;4)通过参与鼓励治疗依从性;5)通过责任感赋予权力。小组成员独立研究并提供了来自几个国家的患者参与策略示例,并研究了在MS及其他慢性病患者参与领域行之有效的干预措施。该小组阐述了他们对这些项目的看法,讨论了实现患者参与的障碍,并提出了克服这些障碍的实用策略。了解影响MS患者参与的问题后,我们可以开始研究增强参与度及后续健康结局的方法。让患者参与需要广泛的多学科方法。