Survey Reveals Shared Decision-Making is Vital in NMOSD Management

Sheryl Lapidus, MA

Neuromyelitis optica spectrum disorder (NMOSD) can be a difficult disease to diagnose, and for some time was thought to be a severe type ofmultiple sclerosis (MS). In past research, NMOSD was observed as a variant of MS, as the phenotype looks similar to optic neuritis and transverse myelitis. If left untreated, the continued inflammation from the disease can lead to severe attacks and permanent disability, including blindness and paralysis.

In recognition of NMOSD Awareness Month in March 2023, Horizon Therapeutics recently shared new findings from a community survey of patients living with NMOSD conducted in collaboration with a number of NMOSD advocacy groups. Responses from the survey were collected from patients with NMOSD and/or their caregivers in December 2022.

According to the respondents, 70% of participants track their day-to-day symptoms, 47% actively participate in NMOSD advocacy/support groups, and 67% do their own research at least monthly. Notably, 66% reported they are satisfied with their treatment and 76% reported having more good days than bad. The results of the survey demonstrated the association between having an engaged, active partnership with a patient’s healthcare providers and improved satisfaction with care.¹

Recently, in an exchange with NeurologyLive®, Sheryl Lapidus, MA, senior director of patient advocacy at Horizon Therapeutics, expanded on the methodology of the patient and caregiver survey. Not only did she touch upon the objectives and methods of the survey, but also explained the main findings from the study. Additionally, Lapidus talked about the implications of the data as well as the importance of the results for clinicians who see patients with NMOSD in their clinical practice.

NeurologyLive: What was the objective and the methods of the survey?

Sheryl Lapidus, MA: The survey aimed to quantify the extent to which self-advocacy and being an informed patient with NMOSD influences the overall impact of the disease and satisfaction with care.

We worked with the NMOSD advocacy groups—the Guthy-Jackson Charitable Foundation, Siegel Rare Neuroimmune Association, and The Sumaira Foundation—to collect responses from 100 people living or caring for someone with NMOSD (totaling 86 patients and 14 care partners) through a 15-minute online survey deployed to the organizations’ direct mailing lists and Facebook pages.

What were the main highlights of the results?

The survey found that people living with NMOSD who are more engaged in their health report increased satisfaction and more good days. Patients who are extremely comfortable discussing their symptoms with their clinician are almost 3 times as likely to be very satisfied with their care and almost twice as likely to have more good days than bad.

However, 1 in 3 reported having more bad days than good days, which is troubling, as bad days can involve excruciating pain, extreme fatigue, and depression, among other debilitating symptoms. This shows there’s more work to mitigate these bad days, and empowering patients through tools and resources could be a first step.

What are the implications of the findings?

Results showed that people living with NMOSD are more satisfied when they speak up with their clinicians. Taking a more active role in one’s health—including tracking day-to-day symptom changes, participating in NMOSD advocacy and support groups, and researching the disease—can also lead to greater care satisfaction.

Self-advocacy is especially important when living with an unpredictable disease like NMOSD, because if left untreated, it can cause repeat attacks and permanent disability, such as blindness and paralysis. Early, accurate diagnosis is crucial to beginning treatment that may prevent potentially irreversible damage.

Are these results important for clinicians to know and if so, why?

Yes, these results speak to the importance of shared decision-making between people living with NMOSD and their clinicians. The survey findings show that there is an opportunity for those living with NMOSD to lead conversations about disease management with their healthcare team and for clinicians to be receptive to these conversations.

As part of the NMOSD Won’t Stop Me, Horizon is encouraging those living with the disease to use their voice and advocate for their health. We are partnering with Christine Ha, who won MasterChef despite losing her vision because of NMOSD. She is a great example of someone who has continued to push forward and advocate for herself despite the challenges of living with this disease.

Transcript edited for clarity.

REFERENCES
1. NMOSD Patient Survey. Horizon Therapeutics. Accessed April 14, 2023. www.hzndocs.com/NMOSD-Wont-Stop-Me-Survey-Infographic.pdf