Lakin Lynsey, Davis Bryan E, Binns Cherie C, Currie Keisha M, Rensel Mary R
The Neurology Group, 9120 Haven Ave, Rancho Cucamonga, CA, USA.
Comprehensive MS Center, The University of California Riverside, 3390 University Ave, Suite 100, Riverside, CA, USA.
Neurol Ther. 2021 Jun;10(1):75-98. doi: 10.1007/s40120-021-00239-2. Epub 2021 Apr 20.
Multiple sclerosis (MS) is a chronic autoimmune inflammatory disease of the central nervous system, leading to neurodegeneration and manifesting as a variety of symptoms. These can include "invisible" symptoms, not externally evident to others, such as fatigue, mood disorders, cognitive impairments, pain, bladder/bowel dysfunction, sexual dysfunction, and vision changes. Invisible symptoms are highly prevalent in people living with MS, with multifactorial etiology and potential to impact the disease course. Patient experiences of these symptoms include both physical and psychosocial elements, which when unaddressed negatively influence many aspects of quality of life and perception of health. Despite the high impact on patient lives, gaps persist in awareness and management of these hidden symptoms. The healthcare provider and patient author experiences brought together here serve to raise the profile of invisible symptoms and review strategies for a team-based approach to comprehensive MS care. We summarize the current literature regarding the prevalence and etiology of invisible symptoms to convey the high likelihood that a person living with MS will contend with one or more of these concerns. We then explore how open communication between people living with MS and their care team, stigma mitigation, and shared decision-making are key to comprehensive management of invisible symptoms. We recommend validated screening tools and technological advancements that may be incorporated into MS care to regularly monitor these symptoms, offering insight into how healthcare providers can both educate and listen to patients, with the goal of improved patient quality of life. By pairing clinical knowledge with an understanding and consideration of the patient perspective, providers will be equipped to foster a patient-centered dialogue that encourages shared decision-making. Invisible symptoms of MS.
多发性硬化症（MS）是一种中枢神经系统的慢性自身免疫性炎症性疾病，会导致神经退行性变，并表现为多种症状。这些症状可能包括他人从外部无法明显察觉的“隐匿性”症状，如疲劳、情绪障碍、认知障碍、疼痛、膀胱/肠道功能障碍、性功能障碍和视力变化。隐匿性症状在多发性硬化症患者中非常普遍，其病因是多因素的，并且有可能影响疾病进程。患者对这些症状的体验包括身体和心理社会因素，若这些因素得不到解决，会对生活质量和健康认知的许多方面产生负面影响。尽管对患者生活影响重大，但在这些隐匿性症状的认知和管理方面仍存在差距。本文汇集了医疗服务提供者和患者作者的经验，旨在提高隐匿性症状的关注度，并审视基于团队的综合多发性硬化症护理策略。我们总结了关于隐匿性症状患病率和病因的现有文献，以表明多发性硬化症患者很可能会面临这些问题中的一个或多个。然后，我们探讨多发性硬化症患者与其护理团队之间的开放沟通、消除污名化以及共同决策如何成为隐匿性症状综合管理的关键。我们推荐可纳入多发性硬化症护理以定期监测这些症状的经过验证的筛查工具和技术进步，深入了解医疗服务提供者如何既能教育患者又能倾听患者意见，以提高患者生活质量。通过将临床知识与对患者观点的理解和考虑相结合，医疗服务提供者将有能力促进以患者为中心的对话，鼓励共同决策。多发性硬化症的隐匿性症状。
