Data showed that slightly more than half of the patients with NMOSD visited at least 2 neurologists before receiving full diagnosis, and less than 30% reported they were aware of at least 1 nearby specialized NMOSD center.
In a recently published cross-sectional, Argentinean-based study, findings suggested that neuromyelitis optica spectrum disorder (NMOSD) is associated with increased health care utilization; however, there remains issues with access to the top care needed, with insurance acting as a barrier.1
Senior investigator Edgar C. Contentti, MD, MSc, assistant professor, Department of Neurosciences, Hospital Aleman, Argentina, and colleagues aimed to evaluate real-world patient experiences in terms of access to care and NMOSD burden in an Argentinean cohort of 100 patients with the condition. A self-administered, anonymous, web-based survey that collected data on age, gender, education level, employment, NMOSD duration, clinical characteristics, complementary diagnostic exams, access to NMOSD diagnosis, access to specialized NMSOD treatment centers, NMOSD relapses in the last 6 months, neurological disability, and use of long-term NMOSD treatment, was sent to 156 patients with NMSOD, of which 100 (64.1%) completed surveys were identified.
Patients who completed the survey were divided into 3 groups: private health insurance (PHI), social health insurance (SHI), and public health insurance (SRHI, Ministry of Public Health). Overall, patients had a mean age at diagnosis of 38.7 years, mean Expanded Disability Status Scale (EDSS) score of 2.8 (±2.3), and had 5.2 (±4.02) years of follow-up. Sociodemographically, 51% of patients were employed (full-time, 57.5%), 11% were currently unemployed, and 13% retired due to their condition.
In terms of healthcare utilization, slightly more than half (55%) of the participants visited between 2 to 3 specialist, either general neurologists or neuroimmunology specialists, for a second opinion before final NMOSD was diagnosed. Anti-aquaporin-4 and/or MOG-antibody testing, critical components to the confirmation of specific autoimmune diseases like NMOSD, were requested by 91% of patients; however, health insurance covered this test partially in 15% of cases. Notably, 33% of these patients paid it in full of their own pocket.
"Our study offers a real-world understanding of the different barriers that a low-prevalence disease may face to get access to appropriate care. It also shows how the availability of laboratory facilities and specific treatments could impact the patients in our region and elsewhere," Contentti et al wrote.1 "Universal access to diagnostic tests, MRI studies, and NMOSD-specific treatments is needed in order to improve the management of these patients with NMOSD worldwide."
There were differences in care based on institution as well, with patients reporting greater access to MRI, outpatient neurology visits in private centers vs public institutions. Additionally, these patients experienced fewer barriers to obtain NMOSD-specific medications. In the context of this study, rituximab, azathioprine, and mycophenolate mofetil were the most commonly used agents. It has been previously documented that mycophenolate mofetil and rituximab use increased with rising country-level income.2
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Although more than half of the cohort saw multiple neurologists before diagnosis, about 3 in every 10 patients (29%) with NMOSD reported knowing at least 1 specialized NMOSD center in the city where they live. Additionally, 24% of patients receiving neurological rehabilitation at the time of the survey, and 29% of them were paying it out of pocket, being significantly more frequent in the public sector than PHI and SHI sectors.
Access to immunosuppressive treatments (ISTs), a critical component to NMOSD care, was recorded in the study, as most patients (92%) were on an IST, and 74% received it as prescribed by their neurologists. When compared with PHI and SHI, the SRHI group showed a longer mean time to MRI, outpatient neurology visits, MRI use paid by the pain, and unemployment. Notably, a regression analysis indicated that private insurance was the only factor associated with appropriate access to long-term NMOSD-specific medications, including IST, as prescribed by their neurologists.
The study investigators concluded that, “Our findings will potentially be a useful tool for national health administrations and decision-makers. They also suggest that changes are needed in current regional policies that negatively impact patients with NMOSD."