Papp Viktoria, Wandall-Holm Malthe, Bacher Svendsen Kristina, Frederiksen Jette, Sellebjerg Finn, Illes Zsolt, Magyari Melinda
Department of Neurology, Odense University Hospital, Odense, Denmark
Danish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Glostrup, Copenhagen, Denmark.
J Neurol Neurosurg Psychiatry. 2025 Jan 16;96(2):184-187. doi: 10.1136/jnnp-2024-333790.
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.
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, χ test or Wilcoxon test were applied for comparison.
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).
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.
水通道蛋白4抗体血清阳性（AQP4-Ab+）的视神经脊髓炎谱系障碍（NMOSD）可能因残疾导致工作能力下降。在此，我们评估了在非标签治疗时代，与普通人群相比，AQP4-Ab+NMOSD患者的社会经济状况。
一项基于全国人口的纵向研究，纳入了所有丹麦的AQP4-Ab+NMOSD患者以及来自普通人群的匹配对照。该队列与丹麦其他全国性人口数据库相关联。研究期间为1992年至2021年。主要结局包括工资收入损失、工作能力受限、残疾抚恤金和婚姻状况。结局的纵向风险以累积发病率曲线呈现。采用Fisher精确检验、χ检验或Wilcoxon检验进行比较。
我们纳入了65例患者，中位随访时间为8.6年。与普通人群相比，发病后（索引年份）年收入显著下降。索引年份后一年，以2015年欧元计算，患者的年均收入中位数为13285（四分位间距：139至36336），而对照为33035（四分位间距：6870至45978）；p = 0.04。索引年份后五年，患者的平均收入进一步降至276（四分位间距：0至23691），而对照为22141（四分位间距：0至42986）；p = 0.03。随访结束时，处于“灵活工作”状态（患者为36.9%，对照为14%，p<0.00）或领取残疾抚恤金（患者为16.9%，对照为4.3%，p<0.00）的患者比例显著更高。
AQP4-Ab+NMOSD患者发病后社会经济状况迅速恶化。这些患者中有很大一部分失去工作能力，给家庭和社会带来了增加的经济负担。
