2023 NMOSD Research Co-Authored by SRNA’s GG deFiebre, PhD, MPH
By Hannah Kelly
In 2023, SRNA’s Director of Research and Programs, GG deFiebre, co-authored two papers published in the Journal Neurology and Therapy. These papers surveyed neurologists from around the world and interviewed patients to explore treatment decisions and understand disease severity and stability in NMOSD.
The first article, “Understanding Treatment Decisions in Neuromyelitis Optica Spectrum Disorder: A Global Clinical Record Review with Patient Interviews,” comments on common treatment practices as well as patient’s perspectives on these treatment decisions.
The first study emphasizes that misdiagnosis of NMOSD is common. Misdiagnosis was associated with delays in starting treatment and more frequent relapses. Patients in the study who were first misdiagnosed felt angry and scared after learning they had NMOSD. One patient interviewed in the study said, “I was scared and angry because I had only just accepted my [wrong] diagnosis and was then diagnosed with something else. I was aware of what NMO was and was terrified of going blind.”
For treatment options, the most commonly chosen long-term therapies were oral steroids and other oral medications that weaken the immune system. For the neurologists surveyed in the study, relapse severity was an important factor in making treatment decisions. Patients with more severe relapses (as determined by neurologists) were more likely to be prescribed monoclonal antibodies than oral corticosteroids or immunosuppressant treatments. Neurologists also did not usually switch medications for patients with mild relapses and/or those who did not experience a significant impact on their quality of life after a relapse. Patients with mild relapses tended to agree with their neurologist’s decision, while others felt frustrated by the lack of treatment change after a relapse. Some patients interviewed in the study reported feeling they often had little input on treatment decisions and felt overwhelmed by their diagnoses. One patient stated, “I did not actively contribute to choosing a medication because I didn’t know the different options. It was entirely my doctor’s decision.”
Because long-term disability is common in NMOSD, it is important for patients to be educated on treatment options and to play an active role in treatment decisions. The results of the first study demonstrate the need for clear definitions of relapse severity to help guide treatment decisions. The second study, “Characterization of Disease Severity and Stability in NMOSD: A Global Clinical Record Review with Patient Interviews,” seeks to address this need. The second study explores both neurologist’s and patient’s perspectives on relapse severity and disease stability.
Overall, the authors found no clear definitions of relapse severity and disease stability. In general, for neurologists, relapse severity depended on how much and how quickly a patient recovered; how much of the spinal cord was involved; and how much disability a patient was left with after an attack. For patients, relapse severity was based on the type and intensity of symptoms; the impact on their daily lives; how much recovery they experienced after an attack; and/or how much lingering disability they experienced after an attack. While many of these factors were similar between neurologists and patients, the study discovered that patients and neurologists did not always agree on the degree of relapse severity. One patient remarked, “[My doctor] said the relapses were mild, but they felt worse to me because I could not feel my arm and I could barely see.” Furthermore, patients often compared a relapse to their previous relapses or to what they had heard about other patients’ relapses. One patient commented, “I classed my relapse as mild because I have read about what they can be like and it was nowhere near as bad as some people have had.”
For disease stability, neurologists reported that more stable patients had fewer, less frequent, and less severe relapses and that they experienced better recovery after a relapse. Patients similarly reported feeling their disease was stable if they did not have a recent relapse and/or new symptoms in the last several months. One patient mentioned, “I think I am stable; I have not relapsed again, and I do not have any symptoms because of my NMO.”
The second study suggests that neurologists use clinical assessments to evaluate relapse severity while patients focus more on the impact on their quality of life and comparison to prior relapses. For disease stability, patients tend to focus on the absence of relapses more than neurologists do.
In summary, these two papers offer interesting comparisons between neurologist and patient perspectives on treatment decisions, relapse severity, and disease stability. The increased availability of treatment options for NMOSD has made decisions surrounding treatment more complex. The studies presented in this blog highlight the importance of combining clinical and patient assessments when considering relapse severity and disease stability to ensure patients receive appropriate and timely treatment.
