The socioeconomic impact of AQP4-antibody seropositive neuromyelitis optica spectrum disorder (AQP4-Ab+ NMOSD) has been a growing concern. A recent comprehensive study evaluated the socioeconomic status of Danish patients afflicted with this condition, providing a stark comparison to the general populace. The study underscores the significant financial and social challenges faced by these patients, highlighting the urgent need for better therapeutic and support mechanisms.
Income Decline and Work Capability
In a longitudinal nationwide study conducted from 1992 to 2021, researchers examined 65 Danish patients diagnosed with AQP4-Ab+ NMOSD, comparing them to matched controls from the general population. The study revealed a sharp decline in income among these patients post-diagnosis. Within one year of disease onset, patients’ median annual income in 2015-indexed Euros fell to €13,285 compared to €33,035 for controls, with the disparity widening even further after five years. This significant income reduction exemplifies the economic barriers these patients face, potentially limiting market access for essential goods and services.
Increased Disability and Social Impact
Furthermore, the study found that a substantial proportion of patients transitioned to ‘flexjob’ schemes or received disability pensions. By the end of the follow-up period, 36.9% of patients were in ‘flexjob’ compared to 14% of controls, and 16.9% received disability pensions versus 4.3% of controls. This shift indicates not only a reduced ability to engage in full-time employment but also a heightened dependency on social support systems. These findings call attention to the need for improved market access to employment opportunities and vocational rehabilitation programs for disabled individuals.
Key Insights
- Patients with AQP4-Ab+ NMOSD experience significant income decline shortly after diagnosis.
- A higher proportion of these patients rely on flexjob schemes or disability pensions compared to the general population.
- The socioeconomic burden on patients underscores the importance of better therapeutic and support systems.
- Enhancing market access for employment opportunities is crucial for improving the quality of life for these patients.
The study concludes that patients with AQP4-Ab+ NMOSD face a rapid deterioration in socioeconomic status post-diagnosis. This decline in work capability and subsequent financial burden affects not only the patients but also their families and society at large. As a result, there is an urgent need for policies aimed at improving market access to employment and support systems for these individuals.
Original Article:
J Neurol Neurosurg Psychiatry. 2024 Jul 22:jnnp-2024-333790. doi: 10.1136/jnnp-2024-333790. Online ahead of print.
ABSTRACT
BACKGROUND: AQP4-antibody seropositive (AQP4-Ab+) neuromyelitis optica spectrum disorder (NMOSD) may cause reduced work capability due to disability. Here, we evaluated the socioeconomic status of patients with AQP4-Ab+NMOSD in off-label therapy era compared with the general population.
METHODS: A longitudinal nationwide population-based study including all Danish patients with AQP4-Ab+NMOSD and matched controls from the general population. The cohort was linked to other Danish nationwide population-based databases. The study period was from 1992 to 2021. The main outcomes were loss of income from salary, limited work capability, disability pension and civil status. The longitudinal risks of outcomes were presented in cumulative incidence curves. Fisher’s exact test, χ2 test or Wilcoxon test were applied for comparison.
RESULTS: We included 65 patients with a median follow-up of 8.6 years. Annual income declined significantly after disease onset (index year) compared with the general population. One year after the index year, the median annual income in 2015-indexed Euro for patients averaged 13 285 (IQR: 139 to 36 336) versus controls 33 035 (IQR: 6870 to 45 978); p=0.04. Five years postindex year, the average income for patients further dropped to 276 (IQR: 0 to 23 691) versus controls 22 141 (IQR: 0 to 42 986); p=0.03. At the end of follow-up, significantly higher proportion of patients were either in ‘flexjob’ (36.9% patients vs 14% controls, p<0.00) or receiving disability pension (16.9% patients vs 4.3% controls, p<0.00).
CONCLUSIONS: The socioeconomic status of patients with AQP4-Ab+NMOSD deteriorates rapidly following disease onset. A substantial proportion of these patients lose their work capacity leading to increased financial burden on both their families and society.
PMID:39038947 | DOI:10.1136/jnnp-2024-333790

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