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 (P13-5.007)

Abstract

<h3>Objective:</h3> To describe and assess patient experiences and quality of life (QoL) in Mexican patients diagnosed with neuromyelitis optica spectrum disorder (NMOSD). <h3>Background:</h3> 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. <h3>Design/Methods:</h3> 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. <h3>Results:</h3> 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. <h3>Conclusions:</h3> 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. <b>Disclosure:</b> Dr. Delgado-Garcia has received research support from Consejo Nacional de Ciencia y Tecnologia (Mexico). Dr. Delgado-Garcia has received research support from Consejo Nacional de Ciencia y Tecnologia (Mexico). Dr. Delgado-Garcia has a non-compensated relationship as a Editorial Team Member with Neurology Resident &amp; Fellow Section that is relevant to AAN interests or activities. Dr. Delgado-Garcia has a non-compensated relationship as a Editorial Board Member with Brain and Life en Espanol that is relevant to AAN interests or activities. Dr. Delgado-Garcia has a non-compensated relationship as a Editorial Board Member with Neurology Clinical Practice that is relevant to AAN interests or activities. Dr. Garcia Sarreon has nothing to disclose. Dr. GOMEZ FIGUEROA has nothing to disclose. Veronica Rivas has nothing to disclose. Ms. Behne has nothing to disclose. Ms. Behne has received personal compensation for serving as an employee of The Guthy-Jackson Charitable Foundation. Ms. Behne has received personal compensation in the range of $50,000-$99,999 for serving as a Independent Contractor with The Guthy-Jackson Charitable Foundation. Dr. Yeaman has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Yeaman has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Genentech-Roche. Dr. Yeaman has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion. The institution of Dr. Yeaman has received research support from National Institutes of Health. The institution of Dr. Yeaman has received research support from U.S. Department of Defense. Dr. Yeaman has received intellectual property interests from a discovery or technology relating to health care. Dr. Yeaman has received intellectual property interests from a discovery or technology relating to health care. Dr. Corona Vazquez has received research support from Consejo Nacional de Ciencia y Tecnologia.