Social support, quality of life and activities of daily living in patients with myasthenia gravis in Spain and Latin America

Abstract

Objective

To determine the relationship of perceived social support with clinical variables, the profile of activities of daily living and quality of life in patients diagnosed with myasthenia gravis living in Spain and Latin America.

Methods

Observational, cross-sectional study. Subjects diagnosed with myasthenia gravis were recruited from associations, foundations and social media in the first quarter of 2022. The Medical Outcomes Study (MOS-SSS), the Myasthenia gravis activities of daily living profile (MG-ADL) and the 15-item Myasthenia Gravis Quality of Life scale revised (MG-QOL15R-S) instruments were included.

Results

Mean time to diagnosis (t = 2,38; P < .05), history of thymoma (χ2 = 5.18; P < .05), MG-ADL global score (t = 4.29; P < .001), and MG-QOL15R-S global score (t = 7.67; P < .001) were related to perceived social support in MG subjects. We also found that MOS-SSS score correlated significantly with MG-ADL (r = −0.15; P < .001) and MG-QOL15R-S (r = −0.27; P < .001) scores.

Conclusions

A history of thymoma reduces the likelihood of high perceived social support, and diagnosis of the disease at less than two years has been associated with a higher frequency of high perceived social support. In addition, high perceived social support is expected to correlate with high quality of life and lower severity of myasthenia gravis symptoms.

Resumen

Objetivo

Determinar la relación del soporte social percibido con las variables clínicas, el perfil de las actividades de la vida diaria y la calidad de vida en pacientes diagnosticados de miastenia gravis residentes en España y Latinoamérica.

Método

Estudio observacional y transversal. Los sujetos diagnosticados de miastenia gravis fueron reclutados a partir de asociaciones, fundaciones y medios sociales en el primer trimestre del 2022. Se incluyeron los instrumentos Medical Outcomes Study (MOS-SSS), Myasthenia gravis activities of daily living profile (MG-ADL) y 15-item Myasthenia Gravis Quality of Life scale revised (MG-QOL15R-S).

Resultados

El tiempo medio del diagnóstico (t = 2,38; P < ,05), los antecedentes de timoma (χ² = 5,18; P < ,05), la puntuación global de MG-ADL (t = 4,29; P < ,001), y la puntuación global de MG-QOL15R-S (t = 7,67; P < ,001) se relacionaron con la percepción de soporte social en los sujetos con MG. También encontramos que la puntuación de MOS-SSS se correlacionó significativamente con las puntuaciones de MG-ADL (r = −0,15; P < ,001) y MG-QOL15R-S (r = −0,27; P < ,001).

Conclusiones

Los antecedentes de timoma reducen la probabilidad de presentar alta percepción del soporte social, y diagnosticar la enfermedad en menos de dos años se ha asociado a una mayor frecuencia de presentar una alta percepción del soporte social. Además, es esperado que la alta percepción de soporte social se correlacione con la alta calidad de vida y con una menor gravedad de los síntomas de la miastenia gravis.