Health literacy among people with systemic sclerosis: a Scleroderma Patient-Centred Intervention Network (SPIN) Cohort cross-sectional study
Claire Adams, Marie-Eve Carrier, Meira Golberg, Natalie Co, Elsa-Lynn Nassar, Linda Kwakkenbos, Susan J Bartlett, Catherine Fortuné, Amy Gietzen, Geneviève Guillot, Amanda Lawrie-Jones, Vanessa L Malcarne, Maureen D Mayes, Michelle Richard, Luc Mouthon, Andrea Benedetti, Brett D Thombs, , Benjamin Chaigne, Karen Gottesman, Sabrina Hoa, Marie Hudson, Laura K Hummers, Yanne Perriault, Danielle Rice, Maureen Sauvé, James Stempel, Robyn K Wojeck, Christian Agard, Laurent Alric, Marc André, Floryan Beaslay, Elana J Bernstein, Sabine Berthier, Lyne Bissonnette, Sophie Blaise, Alessandra Bruns, Carlotta Cacciatore, Patricia Carreira, Marion Casadevall, Lorinda Chung, Benjamin Crichi, Thylbert Deltombe, Christopher P Denton, Tannvir Desroche, Robyn Domsic, James V Dunne, Bertrand Dunogue, Regina Fare, Dominique Farge, Paul R Fortin, Tracy Frech, Loraine Gauzère, Anne Gerber, Jessica K Gordon, Brigitte Granel, Aurélien Guffroy, Geneviève Gyger, Eric Hachulla, Daphna Harel, Monique Hinchcliff, Michael Hugues, Alena Ikic, Sindhu R Johnson, Nader Khalidi, Kimberly S Lakin, Marc Lambert, Maggie Larche, David Launay, Yvonne C Lee, Paul Legendre, Catarina Leite, Hélène Maillard, Nancy Maltez, Joanne Manning, Marie Isabelle, Maria Martin Lopez, Thierry Martin, Ariel Masetto, Arsène Mekinian, Sheila Melchor Díaz, Morgane Mourguet, Christelle Nguyen, Karen Nielsen, Mandana Nikpour, Louis Olagne, Vincent Poindron, Janet Pope, Susanna Proudman, Grégory Pugnet, Loïc Raffray, François Rannou, Alexis Régent, Frederic Renou, Sébastien Rivière, David Robinson, Esther Rodríguez, Tatiana Sofia, Sophie Roux, Perrine Smets, Vincent Sobanski, Robert F Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, Damien Vagner, John Varga, Pearce Wilcox, Vanessa Cook, Cassidy Dal, Djellza Dani, D Monica, Sophie Hu, Nicole Iordache, Maria NassarAbstract
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 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 1019 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 0.25–3.01) was significantly associated with higher health literacy scores. Compared with 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.