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多发性硬化症护理中基于种族和地域的差异:对患者经历的定性研究

Race- and place-based disparities in multiple sclerosis care: A qualitative study of patient experiences.

作者信息

Bhattiprolu Kavya, Opelt Brett L, Jones Miranda R, Hughes Abbey J, Beier Meghan, Mowry Ellen M, Pollack Porter Keshia M, Cooper Lisa A, Bhattarai Jagriti Jackie

机构信息

Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

University of Delaware, Newark, DE, USA.

出版信息

Mult Scler J Exp Transl Clin. 2025 May 8;11(2):20552173251336753. doi: 10.1177/20552173251336753. eCollection 2025 Apr-Jun.

Abstract

BACKGROUND

Multiple sclerosis is a neurodegenerative and neuroinflammatory disease causing a variety of symptoms, involving physical and cognitive domains. Previous research has demonstrated that racial disparities are prevalent in multiple sclerosis neurological outcomes, with Black individuals facing worse disease outcomes than their White counterparts.

OBJECTIVE

To examine the race- and place-based differences in experiences with multiple sclerosis care among Black and White participants.

METHODS

Qualitative data were collected from 20 adults with multiple sclerosis during four focus groups and ten individual semi-structured interviews. Focus groups and interviews were audio-recorded, transcribed, and coded in NVivo. Thematic analysis was used to identify dominant themes.

RESULTS

Thematic analysis resulted in the following themes: health care quality, health literacy, patient-provider communication, multiple sclerosis, place, and race. Similarities and differences between Black and White participants were identified that may be fruitful areas for intervention to reduce existing disparities.

CONCLUSIONS

Both Black and White participants described positive experiences they have had with their multiple sclerosis care. However, only Black participants discussed the role of health insurance and facing discrimination. Only White participants reported residing in an area with access to many providers.

摘要

背景

多发性硬化症是一种神经退行性和神经炎症性疾病,会引发多种症状,涉及身体和认知领域。先前的研究表明,多发性硬化症的神经学结果中普遍存在种族差异,黑人个体比白人个体面临更差的疾病结果。

目的

研究黑人和白人参与者在多发性硬化症护理体验方面基于种族和地区的差异。

方法

在四个焦点小组和十次个人半结构化访谈中,从20名成年多发性硬化症患者中收集定性数据。焦点小组和访谈进行了录音、转录,并在NVivo中编码。采用主题分析法确定主要主题。

结果

主题分析得出以下主题:医疗质量、健康素养、医患沟通、多发性硬化症、地区和种族。确定了黑人和白人参与者之间的异同,这些可能是减少现有差异的有效干预领域。

结论

黑人和白人参与者都描述了他们在多发性硬化症护理方面的积极经历。然而,只有黑人参与者讨论了医疗保险的作用和面临的歧视。只有白人参与者报告居住在有许多医疗服务提供者的地区。

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