Areas of improvement for high-quality multiple sclerosis care: Insights from interviews with people with multiple...

Facing lifelong medical care needs, people with multiple sclerosis (MS) experience challenges to access healthcare, particularly high-quality MS care, in many settings. Moreover, people with MS, providers, and clinical educators may have different perspectives regarding high-quality care.

This study seeks to better understand perspectives on high-quality care for multiple sclerosis and compare perspectives between people with MS, MS-specialist and non-MS specialist providers, and clinical educators to better support clinical education efforts to improve care.

We conducted qualitative semi-structured interviews (N = 42) with (1) experts in clinical education, (2) specialists in clinical care, (3) non-MS specialist clinicians, and (4) people with MS. Interviews were transcribed and coded for areas of improvement for MS care.

Participant groups agreed regarding the need for improvement in (1) disease modifying therapies and other medications (e.g., understanding options, monitoring safety, and prescribing higher efficacy treatments), (2) working with other providers (e.g., collaborating across disciplines, coordinating with providers, and referring to specialists), (3) person-centered care (e.g., communicating clearly, listening, and respecting patient decision-making), and (4) diagnosis (e.g., using current diagnostic criteria and reducing time to diagnosis). People with MS strongly emphasized person-centered care.

It is essential to understand how key groups define high-quality care to improve access to high-quality care beyond specialty settings. These insights will help clinical educators identify key areas for improvement when designing clinical education and providers deliver clinical care. While this study focused on MS, definitions of quality care may be applied to other conditions with complex neurological symptoms.