Health literacy among people with systemic sclerosis: a Scleroderma Patient-Centred Intervention Network (SPIN) Cohort cross-sectional study
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 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.
Related
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- Health literacy level and influencing factors among the French Scleroderma Association (ASF) members: a cross-sectional survey
- Sarcopenia in systemic sclerosis-associated interstitial lung disease: A cross-sectional radiological and functional assessment.
- Donor-Resolved Analysis of HES1-Associated Fibroblast States in Systemic Sclerosis
- Anti-fibrillarin Positive Systemic Sclerosis Presenting With Myositis and Perimyocarditis
BibTeX
@article{adams2026health,
title = {{Health literacy among people with systemic sclerosis: a Scleroderma Patient-Centred Intervention Network (SPIN) Cohort cross-sectional study}},
author = {Claire Adams and Marie-Eve Carrier and Meira Golberg and Natalie Co and Elsa-Lynn Nassar and Linda Kwakkenbos and Susan J Bartlett and Catherine Fortuné and Amy Gietzen and Geneviève Guillot and Amanda Lawrie-Jones and Vanessa L Malcarne and Maureen D Mayes and Michelle Richard and Luc Mouthon and Andrea Benedetti and Brett D Thombs and Benjamin Chaigne and Benjamin Chaigne and Karen Gottesman and Sabrina Hoa and Marie Hudson and Laura K Hummers and Yanne Perriault and Danielle Rice and Maureen Sauvé and James Stempel and Robyn K Wojeck and Christian Agard and Laurent Alric and Marc André and Floryan Beaslay and Elana J Bernstein and Sabine Berthier and Lyne Bissonnette and Sophie Blaise and Alessandra Bruns and Carlotta Cacciatore and Patricia Carreira and Marion Casadevall and Lorinda Chung and Benjamin Crichi and Thylbert Deltombe and Christopher P Denton and Tannvir Desroche and Robyn Domsic and James V Dunne and Bertrand Dunogue and Regina Fare and Dominique Farge and Paul R Fortin and Tracy Frech and Loraine Gauzère and Anne Gerber and Jessica K Gordon and Brigitte Granel and Aurélien Guffroy and Geneviève Gyger and Eric Hachulla and Daphna Harel},
journal = {Rheumatology (Oxford, England)},
year = {2026},
month = oct,
doi = {10.1093/rheumatology/keag558},
url = {https://doi.org/10.1093/rheumatology/keag558},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Health literacy among people with systemic sclerosis: a Scleroderma Patient-Centred Intervention Network (SPIN) Cohort cross-sectional study
AU - Claire Adams
AU - Marie-Eve Carrier
AU - Meira Golberg
AU - Natalie Co
AU - Elsa-Lynn Nassar
AU - Linda Kwakkenbos
AU - Susan J Bartlett
AU - Catherine Fortuné
AU - Amy Gietzen
AU - Geneviève Guillot
AU - Amanda Lawrie-Jones
AU - Vanessa L Malcarne
AU - Maureen D Mayes
AU - Michelle Richard
AU - Luc Mouthon
AU - Andrea Benedetti
AU - Brett D Thombs
AU - Benjamin Chaigne
AU - Benjamin Chaigne
AU - Karen Gottesman
AU - Sabrina Hoa
AU - Marie Hudson
AU - Laura K Hummers
AU - Yanne Perriault
AU - Danielle Rice
AU - Maureen Sauvé
AU - James Stempel
AU - Robyn K Wojeck
AU - Christian Agard
AU - Laurent Alric
AU - Marc André
AU - Floryan Beaslay
AU - Elana J Bernstein
AU - Sabine Berthier
AU - Lyne Bissonnette
AU - Sophie Blaise
AU - Alessandra Bruns
AU - Carlotta Cacciatore
AU - Patricia Carreira
AU - Marion Casadevall
AU - Lorinda Chung
AU - Benjamin Crichi
AU - Thylbert Deltombe
AU - Christopher P Denton
AU - Tannvir Desroche
AU - Robyn Domsic
AU - James V Dunne
AU - Bertrand Dunogue
AU - Regina Fare
AU - Dominique Farge
AU - Paul R Fortin
AU - Tracy Frech
AU - Loraine Gauzère
AU - Anne Gerber
AU - Jessica K Gordon
AU - Brigitte Granel
AU - Aurélien Guffroy
AU - Geneviève Gyger
AU - Eric Hachulla
AU - Daphna Harel
PY - 2026
DA - 2026/10/19
JO - Rheumatology (Oxford, England)
DO - 10.1093/rheumatology/keag558
UR - https://doi.org/10.1093/rheumatology/keag558
AB - 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.
SN - 1462-0324
SN - 1462-0332
ER -