Chiu Chungyi, Bishop Malachy, McDaniels Bradley, Kim Byung-Jin, Tiro Lebogang
Department of Kinesiology and Community Health, University of Illinois at Urbana-Champaign, Champaign, IL, USA.
Department of Early Childhood, Special Education, and Rehabilitation Counseling, University of Kentucky, Lexington, KY, USA.
J Patient Exp. 2020 Feb;7(1):34-41. doi: 10.1177/2374373518812078. Epub 2018 Nov 21.
Comprehensive and effective multiple sclerosis (MS) health care requires understanding of patients' needs, preferences, and priorities.
To evaluate priorities of patients with MS for their MS care.
Participants included 3003 Americans with MS recruited through the National MS Society and the North American Research Committee on Multiple Sclerosis patient registry. Participants completed a comprehensive questionnaire on aspects of their health-care experiences.
Participants identified the top 3 health-care priorities as (1) the affordability of MS health care, (2) ensuring that non-MS health-care providers have more education about MS and how it can interact with other conditions, and (3) access to an MS center or specialized MS clinic with MS health-care professionals together in one place. Participants receiving care in an MS center rated the quality and their satisfaction with care higher than those receiving care in other settings. Although having the opportunity to evaluate their health-care quality was important to the participants, only 36.4% had been provided the opportunity in the past year.
This study identifies health-care priorities and concerns for Americans with MS.
全面且有效的多发性硬化症（MS）医疗保健需要了解患者的需求、偏好和优先事项。
评估MS患者对其MS护理的优先事项。
参与者包括通过美国国家MS协会和北美MS研究委员会患者登记处招募的3003名美国MS患者。参与者完成了一份关于其医疗保健经历各方面的综合问卷。
参与者确定的前三大医疗保健优先事项为：（1）MS医疗保健的可承受性；（2）确保非MS医疗保健提供者接受更多关于MS及其与其他病症相互作用方式的教育；（3）能够前往一个集中了MS医疗保健专业人员的MS中心或专业MS诊所。在MS中心接受护理的参与者对护理质量和满意度的评分高于在其他环境中接受护理的参与者。尽管有机会评估其医疗保健质量对参与者很重要，但过去一年中只有36.4%的人获得了这样的机会。
本研究确定了美国MS患者的医疗保健优先事项和关注点。
