Beyond Relapse Rates: Treatment Satisfaction and the Future of NMOSD Care

Neuromyelitis optica spectrum disorder (NMOSD) is a relapse-driven disease in which long-term disability prevention remains the central therapeutic goal. As the treatment landscape expands, clinicians are increasingly tasked with balancing efficacy, infection risk, tolerability, and long-term safety when selecting disease-modifying therapy.

In this 5-part panel series, Shamik Bhattacharyya, MD, Anne M. Finucane Endowed Chair in Neurology and Associate Professor of Neurology at Harvard Medical School, and Philippe-Antoine Bilodeau, MD, of the Division of Neuroimmunology at Mass General Brigham and Instructor in Neurology at Harvard Medical School, unpack their real-world comparative effectiveness study published in Neurology. Drawing on decades of institutional data, they examine how FDA-approved NMOSD therapies compare with rituximab and traditional immunosuppressants, and what these findings mean for contemporary clinical decision-making.

In this episode, the conversation shifts from physician-defined outcomes to the patient perspective. The panel discusses the limitations of traditional clinical endpoints, the potential value of validated treatment satisfaction questionnaires in NMOSD, and how differences in infusion frequency, route of administration, and immunologic mechanism—particularly with complement inhibition—may influence quality of life and future treatment paradigms.

Edited Transcript

Shamik Bhattacharyya, MD:

I can start with this. The broader issue here is how we assess treatments. We often assess them from the physician’s perspective: Did the patient have relapses? Did they develop infections? But for patients, the considerations are much broader.

How does the treatment impact my daily schedule? Can I work while on it? Does the infusion itself take away two days of my life, including the infusion time, premedications, and potential adverse effects? These are very real concerns.

In this study, we tried to capture what we think are three important pillars for patients: safety, efficacy, and tolerability. But we assessed those from the medical record perspective—the physician’s lens—not directly from the patient perspective.

As a next step, we need to validate treatment satisfaction questionnaires that best reflect patient experience in autoimmune neurologic disorders. Many such questionnaires exist for other medical conditions, but few are specifically validated in autoimmune neurologic diseases. That would be a complementary step: taking the physician perspective and pairing it with the patient experience perspective. The intersection of those two may help determine which therapy is truly the best to prescribe.

Philippe-Antoine Bilodeau, MD:

I agree with Dr. Bhattacharyya. The endpoints in this trial lumped together a number of issues around tolerability, including frequency of infusions and route of administration. These differ widely among therapies.

For example, some treatments, such as inebilizumab and rituximab, are given as infusions every six months. Satralizumab is administered as a monthly injection. Eculizumab was given every two weeks, and now ravulizumab can be administered every eight weeks. These differences are significant.

As we saw from our cohort demographics, many of our patients are in their 40s, in their prime working years, and often have families. Treatment logistics matter. I think clinical trials are increasingly making efforts to quantify these aspects, but when we speak to patients in clinic, this is often one of the most important issues that comes up.