MS patients value empathy as a top priority in their healthcare

While doctors and specialists view “high-quality” multiple sclerosis (MS) care through the lens of effective treatments and faster diagnosis, patients have a different priority: being heard, according to a recent study.

Researchers interviewed a range of specialists and patients to bridge the gap in how these groups define excellence in healthcare. For patients, person-centered care was the most frequently cited area for improvement, ranking higher than technical expertise in disease management.

“It is essential to understand how key groups define high-quality care to improve access… beyond specialty settings,” researchers wrote, noting that these insights could help clinical educators design training programs that better reflect patient needs.

The study, “Areas of improvement for high-quality multiple sclerosis care: Insights from interviews with people with multiple sclerosis, providers, and clinical educators,” was published in Disability and Health Journal.

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Differing definitions of excellence

MS occurs when the immune system mistakenly attacks the protective covering of nerves, causing symptoms that worsen over time and interfere with daily activities. Because patients often require lifelong care and may lack access to specialized centers, healthcare providers often disagree on what constitutes the highest quality of care.

To explore these differences, researchers interviewed 42 participants, including nine patients, 13 MS specialists, 11 non-MS specialists, and nine clinical educators. This work was conducted as part of ECHO MS, a national program designed to help general neurologists and primary care doctors improve their MS expertise and care training.

The interviews were semi-structured, meaning the interviewer followed a guide of key questions but allowed open discussion. The researchers then analyzed the data for common themes and patterns.

All groups agreed that several areas of care needed improvement. The top three areas named by healthcare providers and clinical educators were disease-modifying treatments and other medications, namely understanding options, monitoring safety, and prescribing more effective treatments; collaboration with other healthcare providers across disciplines; and diagnosis, including using up-to-date diagnostic criteria and reducing time to diagnosis.

One non-specialist provider noted that the “paradigm has shifted” toward earlier and more aggressive treatment, meaning there is simply more for non-specialists to learn about dosing and clinical indications. Both specialist and non-specialist doctors also stressed the importance of distinguishing MS from similar diseases through better MRI interpretation.

In contrast, patients focused on the importance of “person-centered” care, an approach that prioritizes their preferences, needs, and values. This includes clear communication, active listening, and feeling supported during difficult treatment decisions.

For one patient, high-quality care means “understanding your medical history and just knowing everything else that’s going on with your life… physical, mental. And just kind of understanding.” Interestingly, patients rarely spoke about medications, leading researchers to suggest that patients likely take their doctor’s pharmaceutical knowledge for granted and choose instead to focus on the quality of the relationship.

Despite their different perspectives, all groups agreed that collaboration is essential. Participants emphasized that better teamwork, ranging from referrals to MS specialists to cross-disciplinary communication, is the best way to ensure patients receive comprehensive care.

These insights will help clinical educators design training that bridges the gap between medical expertise and patient experience, according to the researchers. While the study focused on MS, the team suggests that this model for defining “high-quality care” could be applied to many other chronic and complex neurological conditions.