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

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.

Authors

Institutions

Publication Details

Journal
Lara D. Veeken
Published
2026-10-19
DOI
https://doi.org/10.1093/rheumatology/keag558
Primary Topic
Health Literacy and Information Accessibility
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

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

Louis Olagne, Dominique Farge, Amanda Lawrie-Jones, S. Blaise et al.
Lara D. Veeken
Health Literacy and Information Accessibility
article

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

Louis Olagne, Dominique Farge, Amanda Lawrie-Jones, S. Blaise, Luc Mouthon, Geneviève Gyger, Lyne Bissonnette, Laura Kathleen Hummers, Loraine Gaüzère, David Launay, Kimberly Showalter Lakin, Nancy Maltez, Michael Hugues, Bertrand Dunogué, Eric HACHULLA, Vanessa L. Malcarne, Regina Faré, Isabelle J. Marié, Maureen Davidica Mayes, Tannvir Desroche, Frédéric Renou, NADER A. KHALIDI, Aurélien Guffroy, G. Pugnet, Linda Kwakkenbos, François Rannou, Robyn K. Wojeck, Anne Gerber, Morgane Mourguet, Daphna Harel, Sindhu R. Johnson, Joanne Manning, Christelle Nguyen, Marion Casadevall, Catherine Fortuné, Catarina Correia Leite, Alexis Régent, Elana J. Bernstein, Monique Hinchcliff, A. Mekinian, C. Agard, Marie‐Eve Carrier, Benjamin Chaigne, Yvonne Lee, James V. Dunne, Tatiana Sofia Rodrı́guez-Reyna, Patricia Esmeralda Carreira, Elsa‐Lynn Nassar, Susan J. Bartlett, Karen Nielsen, Janet Pope, Thylbert Deltombe, Danielle Brittany Rice, Tracy Frech, Michelle Richard, Amy Gietzen, Paul Legendre, Esther Rodríguez Almazar, Ariel Masetto, Brett D. Thombs, Paul R. Fortin, Benjamin Crichi, Sheila Melchor, Maureen Sauvé, David Robinson, Carlotta Cacciatore, Jessica Gordon, Karen Gottesman, Loïc Raffray, Claire Adams, Sophie Roux, Alena Ikic, Alessandra Bruns, Natalie W. Co, Thierry Martin, Marc André, Floryan Beaslay, Vincent Poindron, P. Smets, Andrea Benedetti, Laurent Alric, S. Berthier, Sébastien Rivière, Meira Golberg, M. Lambert, James Stempel, Yanne Perriault, Mandana NIKPOUR, Geneviève Guillot, Lorinda S Chung, the SPIN investigators, Susanna Proudman, Marie Hudson, Brigitte Granel-Rey, Sabrina Hoa, Christopher P Denton, Héléne Maillard, Maria Martin Lopez, Robyn Domsic, Maggie Larche
article en

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.

Lara D. Veeken
Radboud University Nijmegen (NL), Université Paris Cité (FR), San Diego State University (US), McGill University Health Centre (CA), Jewish General Hospital (CA), Radboud University Medical Center (NL), Hôpital Cochin (FR), Assistance Publique – Hôpitaux de Paris (FR), Radboud Institute for Molecular Life Sciences (NL), La Boîte à lettres (CA), Scleroderma Foundation (US), Nova Scotia Department of Energy (CA), McGill University (CA)
Openalex Percentile: Top 8%
Health Literacy and Information Accessibility
DOIOpen Access PDFOpenAlex
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.