Health literacy among people with systemic sclerosis: a scleroderma patient-centred intervention network (SPIN) cohort cross-sectional study

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ID: 332965
2026
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Abstract
OBJECTIVE: Health literacy reflects the ability to find, understand, evaluate, and use information to make health-related decisions. We evaluated sociodemographic and disease factors associated with health literacy among people with systemic sclerosis (SSc). METHODS: Participants with SSc in the Scleroderma Patient-centred Intervention Network Cohort completed the Health Literacy Scale19-12 Item Questionnaire from February to November 2025. Multivariable linear regression was used to assess associations of sociodemographic and disease characteristics with health literacy. RESULTS: The 1,019 participants were mainly female (N = 898, 88%) and White (N = 850, 84%). Mean (SD) years of education was 15.5 (3.9). Most had limited cutaneous SSc (N = 669, 66%). Mean health literacy total score was 69.7; 438 (43%) participants had excellent or sufficient and 581 (57%) had problematic or inadequate health literacy. Education (1.63 points per 5 years, 95% CI 0.25 to 3.01) was significantly associated with higher health literacy scores. Compared to the United States, participants from Canada (-4.98 points, 95% CI -7.99 to -1.97), the United Kingdom (-7.79 points, 95% CI -12.03 to -3.55), France (-6.05 points, 95% CI -8.84 to -3.27), and Australia, Mexico, or Spain (-7.02 points, 95% CI -12.39 to -1.66) had significantly lower health literacy scores. Age, gender, race or ethnicity, marital status, time since first non-Raynaud symptom onset, and disease subtype were not associated with health literacy. CONCLUSION: The association between health literacy and education was small. Differences between countries may reflect self-evaluation tendencies. More work is needed to better understand health literacy measurement.
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Authors Claire Adams, Marie‐Eve Carrier, Meira Golberg, Natalie W. Co, Elsa‐Lynn Nassar, Linda Kwakkenbos, Susan J. Bartlett, Catherine Fortuné, Amy Gietzen, Geneviève Guillot, Amanda Lawrie-Jones, Vanessa L. Malcarne, Maureen Davidica Mayes, Michelle Richard, Luc Mouthon, Andrea Benedetti, Brett D. Thombs, the Spin investigators, Benjamin Chaigne, Karen Gottesman, Sabrina Hoa, Marie Hudson, Laura Kathleen Hummers, Yanne Perriault, Danielle Brittany Rice, Maureen Sauvé, James Stempel, Robyn K. Wojeck, C. Agard, Laurent Alric, Marc André, Floryan Beaslay, Elana J. Bernstein, S. Berthier, Lyne Bissonnette, S. Blaise, Alessandra Bruns, Carlotta Cacciatore, Patricia Esmeralda Carreira, Marion Casadevall, Lorinda S Chung, Benjamin Crichi, Thylbert Deltombe, Christopher P Denton, Tannvir Desroche, Robyn Domsic, James V. Dunne, Bertrand Dunogué, Regina Faré, Dominique Farge, Paul R. Fortin, Tracy Frech, Loraine Gaüzère, Anne Gerber, Jessica Gordon, Brigitte Granel-Rey, Aurélien Guffroy, Geneviève Gyger, Eric Hachulla, Daphna Harel, Monique Hinchcliff, Michael Hugues, Alena Ikic, Sindhu R. Johnson, Nader A. Khalidi, Kimberly Showalter Lakin, M. Lambert, Maggie Larche, David Launay, Yvonne Lee, Paul Legendre, Catarina Correia Leite, Héléne Maillard, Nancy Maltez, Joanne Manning, Isabelle Marié, Maria Martin Lopez, Thierry Martin, Ariel Masetto, A. Mekinian, Sheila Melchor, Morgane Mourguet, Christelle Nguyen, Karen Nielsen, Mandana Nikpour, Louis Olagne, Vincent Poindron, Janet Pope, Susanna Proudman, G. Pugnet, Loïc Raffray, François Rannou, Alexis Régent, Frédéric Renou, Sébastien Rivière, David Robinson, Esther Rodríguez Almazar, Tatiana Sofia Rodrı́guez-Reyna, Sophie Roux, P. Smets
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Journal Lara D. Veeken
Year 2026
DOI
10.1093/rheumatology/keag558
URL
https://doi.org/10.1093/rheumatology/keag558
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