Marrie Ruth Ann, Lancia Samantha, Cutter Gary R, Fox Robert J, Salter Amber
Department of Internal Medicine (RAM); Department of Community Health Sciences (RAM), Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada; Department of Neurology (SL, AS), Section on Statistical Planning and Analysis, UT Southwestern, Dallas, TX; Department of Biostatistics (GRC), University of Alabama in Birmingham, AB; and Mellen Center for Multiple Sclerosis (RJF), Neurological Institute, Cleveland Clinic, OH.
Neurol Clin Pract. 2024 Dec;14(6):e200338. doi: 10.1212/CPJ.0000000000200338. Epub 2024 Aug 16.
Despite their high health care use, it is unclear whether the health care needs of people with MS are being met and what their priorities are. We assessed priorities for access to, and affordability of care, by people living with MS in the United States. We also tested the association between perceived inadequate access to care and health-related quality of life (HRQoL).
In Fall 2022, we conducted a cross-sectional survey of participants in the North American Research Committee on Multiple Sclerosis Registry about access to care and HRQoL (Health Utilities Index Mark III). We used multivariable polytomous logistic regression to test sociodemographic and clinical factors associated with access to care. We used multivariable linear regression analysis to test the association between access to care and HRQoL.
We included 4,914 respondents in the analysis, of whom 3,974 (80.9%) were women, with a mean (SD) age 64.4 (9.9) years. The providers who were most reported as needed but inaccessible were complementary providers (35.5%), followed by allied health providers (24.2%), occupational therapists (22.7%), and mental health providers (20.7%). Over 80% of participants reported that it was important or very important to be able to get an appointment with their primary MS health care provider when needed, to have sufficient time in their appointments to explain their concerns, to see their neurologist if their status changed, and that their health care providers communicated to coordinate their care. Participants who reported needing to see the provider but not having access or seeing the provider but would like to see them more often had lower HRQOL (ranging from -0.059 to -0.176) than participants who saw the provider as much as needed.
Gaps in access to care persist for people with MS in the United States and substantially affect HRQoL. Improving access to care for people with MS should be a health system priority.
尽管多发性硬化症（MS）患者的医疗保健利用率很高，但尚不清楚他们的医疗保健需求是否得到满足以及他们的优先事项是什么。我们评估了美国MS患者在获得医疗服务和医疗费用可承受性方面的优先事项。我们还测试了感知到的医疗服务获取不足与健康相关生活质量（HRQoL）之间的关联。
2022年秋季，我们对北美多发性硬化症研究委员会登记处的参与者进行了一项关于医疗服务获取和HRQoL（健康效用指数第三版）的横断面调查。我们使用多变量多分类逻辑回归来测试与医疗服务获取相关的社会人口学和临床因素。我们使用多变量线性回归分析来测试医疗服务获取与HRQoL之间的关联。
我们纳入了4914名受访者进行分析，其中3974名（80.9%）为女性，平均（标准差）年龄为64.4（9.9）岁。最常被报告为需要但无法获得的医疗服务提供者是补充医疗服务提供者（35.5%），其次是专职医疗服务提供者（24.2%）、职业治疗师（22.7%）和心理健康服务提供者（20.7%）。超过80%的参与者报告说，能够在需要时预约他们的主要MS医疗服务提供者、在预约时有足够的时间解释他们的担忧、如果病情变化能看神经科医生以及他们的医疗服务提供者进行沟通以协调他们的护理是重要或非常重要的。报告需要看医疗服务提供者但无法获得或看过但希望更频繁就诊的参与者的HRQOL低于按需就诊的参与者（范围从-0.059到-0.176）。
美国MS患者在医疗服务获取方面的差距仍然存在，并对HRQoL产生重大影响。改善MS患者的医疗服务获取应是卫生系统的优先事项。
