Patient-reported quality of life and perceived disease burden in mexican patients with neuromyelitis optica spectrum disorder: a cross-sectional analysis.

BACKGROUND

Neuromyelitis optica spectrum disorder (NMOSD) can cause substantial disability at clinical onset and with each subsequent relapse. While patient-reported outcomes (PROs) have been explored in high-income settings, data from Latin America remain scarce.

OBJECTIVE

To explore the impact of NMOSD on health-related quality of life (QoL) and disease burden in Mexican patients, including physical, emotional, and socioeconomic dimensions.

METHODS

We conducted a cross-sectional survey of 66 adults with NMOSD at a national referral center, using validated patient-reported outcome instruments (SF-36 Role-Physical [RP] and Role-Emotional [RE] subscales, functional domains, and socioeconomic ratings).

RESULTS

Patients reported substantial delays in diagnosis (median 12 months). QoL was markedly reduced compared with healthy Mexican adults (RP 34.1 vs. 88.7; RE 44.9 vs. 88.9). Physical and emotional limitations were highly prevalent (>70 % and >60 %, respectively), and overall QoL impact reached a median of 4/6. Bladder and bowel dysfunction, pain, and social disruption imposed the greatest burdens. Economic hardship was severe (mean 7.6/10) and correlated with physical and emotional impairment. Recent relapses and persistent symptoms strongly worsened QoL, while disease duration alone did not.

CONCLUSIONS

Mexican patients with NMOSD experience profound impairments in daily functioning, compounded by financial strain and barriers to timely care. Addressing these multidimensional burdens requires earlier diagnosis, equitable access to effective therapies, and integration of patient-reported outcomes into routine multidisciplinary management.