Muscle & nerve · 2026
Health Literacy in Patients With Myasthenia Gravis: A Cross-Sectional Study.
СтатьяНаблюдательное исследованиеМногоцентровое исследованиеНазвание и аннотация: Перевод в очереди
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Pastore Francesco, Simonetti Valentina, Milella Giammarco, Forastefano Barbara, Domenicone Emanuela, Ferorelli Davide, DeTommaso Marina, Cicolini Giancarlo, Comparcini Dania
Аннотация
INTRODUCTION/AIMS: Health literacy (HL) can influence self-management and outcomes in chronic diseases, but it remains poorly characterized in the context of rare diseases, including myasthenia gravis (MG). This study aimed to explore general HL levels and specific HL domains and competencies in adults with MG and their associations with sociodemographic, clinical, and organizational factors.
METHODS: A multicentre, observational, cross-sectional study was conducted between April and October 2024 in 22 neurology centres located in 11 regions of northern, central, and southern Italy. Eligible participants were adult patients (≥ 18 years) with a confirmed diagnosis of MG. Comparisons across patient groups were explored with non-parametric tests; multivariable linear models were used to estimate adjusted associations.
RESULTS: A total of 113 participants were enrolled. The median HLS19-Q12 total score was 58.3 (IQR: 41.7-75.0), indicating problematic HL. In adjusted models, higher education was significantly associated with lower appraisal competence (β = -11.1, 95% CI: -20.2, -2.0). Not meeting the Patient Acceptable Symptom State (PASS) was significantly associated with lower scores across multiple domains and competencies, while follow-up in centres with nurses specialized in MG was significantly associated with higher scores in access (β = 8.2, 95% CI: 0.9, 15.6), understanding (β = 10.8, 95% CI: 2.1, 19.4), application (β = 10.6, 95% CI: 2.6, 18.7), health care (β = 11.5, 95% CI: 2.9, 20.0), and health promotion (β = 11.9, 95% CI: 3.5, 20.2).
DISCUSSION: Symptom-burdened patients and centres without specialized nursing support appear to be priority targets for HL-oriented interventions and organizational redesign.
METHODS: A multicentre, observational, cross-sectional study was conducted between April and October 2024 in 22 neurology centres located in 11 regions of northern, central, and southern Italy. Eligible participants were adult patients (≥ 18 years) with a confirmed diagnosis of MG. Comparisons across patient groups were explored with non-parametric tests; multivariable linear models were used to estimate adjusted associations.
RESULTS: A total of 113 participants were enrolled. The median HLS19-Q12 total score was 58.3 (IQR: 41.7-75.0), indicating problematic HL. In adjusted models, higher education was significantly associated with lower appraisal competence (β = -11.1, 95% CI: -20.2, -2.0). Not meeting the Patient Acceptable Symptom State (PASS) was significantly associated with lower scores across multiple domains and competencies, while follow-up in centres with nurses specialized in MG was significantly associated with higher scores in access (β = 8.2, 95% CI: 0.9, 15.6), understanding (β = 10.8, 95% CI: 2.1, 19.4), application (β = 10.6, 95% CI: 2.6, 18.7), health care (β = 11.5, 95% CI: 2.9, 20.0), and health promotion (β = 11.9, 95% CI: 3.5, 20.2).
DISCUSSION: Symptom-burdened patients and centres without specialized nursing support appear to be priority targets for HL-oriented interventions and organizational redesign.