Patient Experience and Quality of Life in Mexican Patients with Neuromyelitis Optica Spectrum Disorder: A Sub-analysis of an International Multicenter Cross-sectional Survey in Latin America
Guillermo Delgado-Garcia1, Alexis García-Sarreón2, Enrique Gómez-Figueroa3, Verónica Rivas-Alonso2, Jacinta M. Behne4, Megan K. Behne4, Michael R. Yeaman5, Teresa Corona Vazquez6
1Department of Clinical Neurosciences, University of Calgary, 2Instituto Nacional de Neurología y Neurocirugía, 3Antiguo Hospital Civil de Guadalajara Fray Antonio Alcalde, 4The Guthy-Jackson Charitable Foundation, 5University of California, Los Angeles, 6Instituto Nacional de Neurología y Neurocirugía & Facultad de Medicina, Universidad Nacional Autónoma de México
Objective:
To describe and assess patient experiences and quality of life (QoL) in Mexican patients diagnosed with neuromyelitis optica spectrum disorder (NMOSD).
Background:
The perceived impact of NMOSD on daily living has been described in North America, Europe, and Asia. However, little is known about how patients experience their disease in Latin America.
Design/Methods:
This study employed a comprehensive disease burden and QoL assessment implementing validated instruments previously used by The Guthy-Jackson Charitable Foundation in North America and Asia.
Results:
In Mexico, 66 patients were included (55 women; median age: 46.5, IQR: 31-52.2 years; median disease duration: 6, IQR: 4-10 years; 87.8% of them seropositive for anti-AQP4 antibodies). Almost three-quarters of participants (74.2%) reported an initial diagnosis of a disease other than NMOSD. NMOSD imposed a significant negative effect on the QoL (median: 4.0, IQR: 3-6; 6-point Likert-type scale [1 = least impact, 6 = greatest impact]); more than one-quarter of participants (25.7%) reported QoL to be greatly affected by NMOSD. Most participants (69.6%) agreed that the NMOSD diagnosis made them uncertain about their future (median: 4, IQR: 3-5; 5-point Likert-type scale [1 = strongly disagree, 5 = strongly agree]). The impact of NMOSD on QoL and future uncertainty due to NMOSD were positively correlated (Spearman’s rho: 0.39). Financially, more than one-third of participants (39.3%) believe their monthly expenses due to NMOSD were a significant burden. The impact of NMOSD on QoL and perceived financial burden were also positively correlated (Spearman’s rho: 0.33). No correlation was demonstrated between the impact of NMOSD on QoL and disease duration.
Conclusions:
Mexican patients reported their QoL is negatively affected by NMOSD. Uncertainty about the future as well as NMOSD-related clinical and financial burden are associated with this negative impact. These findings suggest that non-medical factors are also relevant in the psychosocial management of people with NMOSD.