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Peer-reviewedCC BY-NC 4.0BMJ Open

Health literacy level and influencing factors among the French Scleroderma Association (ASF) members: a cross-sectional survey

  • Magali Le Brun1,2
  • Quentin Gomes De Pinho1,2
  • Marie-Claude Lagouanelle2,3
  • Aude Ansel-Wallois2
  • Lila Camps4
  • Shani Diai2,5
  • Gilles Kaplanski1,2
  • Audrey Benyamine1,2
  • Brigitte Granel1,2
5 affiliations
  1. 1Internal Medicine Department - Hôpital Nord, Assistance Publique - Hopitaux de Marseille, Marseille, France
  2. 2Aix-Marseille Université, Marseille, France
  3. 3Medical Evaluation Department - Hôpitaux Sud, Assistance Publique - Hopitaux de Marseille, Marseille, France
  4. 4French Scleroderma Association, Association des Sclérodermiques de France, Baccon, France
  5. 5Methodological Support Unit for Clinical and Epidemiological Research, Assistance Publique - Hopitaux de Marseille, Marseille, France
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Abstract

Objectives Health literacy (HL) refers to the ability to access, evaluate, apply and communicate information to promote, maintain and improve one’s health. Our primary objective was to assess HL level among the French Scleroderma Association (ASF) members using two validated questionnaires, FCCHL14 (Functional, Communicative and Critical Health Literacy scale 14) and HLS-EU16 (European Health Literacy Survey Questionnaire). The secondary objectives were to identify factors associated with HL and to explore the correlation between the two HL questionnaires.Design We conducted a cross-sectional study based on self-administered online questionnaires.Setting Systemic sclerosis (SSc) patients were recruited among adherent members to the ASF, via their electronic newsletter.Participants We included ASF members who completed the study and both self-administered HL questionnaires, provided that they had no more than two missing answers on each form. This represented 296 patients of whom 89% were women with an average age of 63.Interventions The questionnaires were available online for 3.5 months. The total estimated time to answer the 57 questions was about 35 min. Anonymous data were collected using LimeSurvey software.Primary and secondary outcome measures Descriptive analyses were performed to assess the population characteristics and the HL level. The FCCHL14 questionnaire was interpreted as a continuous variable whereas HLS-EU16 score determined three levels of HL (insufficient, average and satisfactory). Comparisons were made between HL scores based on patient characteristics. Secondary, potential associated factors were included in a multivariate analysis with an alpha threshold at 0.05. Spearman’s correlation coefficient was used to state correlation between the two HL scores.Results The studied population demonstrated an excellent proficiency in French language for 69% of cases, a high level of education for 64% and high social status for 48%. Patients were mainly followed at an expert centre in autoimmune diseases (58%). The FCCHL14 questionnaire indicated an excellent global, FCCHL with a mean global score of 11.3/15. HLS-EU-Q16 showed insufficient HL in 26.7%, average in 30.4% and satisfactory in 43%. FCCHL14 score was higher among women (p=0.034), people declaring affluent social status (p=0.028) and with a higher study level (p<0.01). HL according to HLS-EU-Q16 was associated with an excellent social status (p=0.044), proficiency in French (p=0.018) and level of information about SSc (p<0.001).Conclusions In this study, ASF members had adequate HL level assessed with two French validated HL questionnaires. A better HL was associated with female sex, a good social status, higher study level and an excellent French language skill. Moreover, adequate HL was associated with a high level of knowledge about SSc and with a follow-up in expert centres.This study has recruitment and self-selection biases since it only concerns patients who are ASF members and, by definition, motivated to learn more on their disease, and with access to a high level of information. Thus, these results cannot be generalised to the entire population suffering from SSc in France.

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Cite

BibTeXRIS
BibTeX
@article{brun2026health,
  title = {{Health literacy level and influencing factors among the French Scleroderma Association (ASF) members: a cross-sectional survey}},
  author = {Magali Le Brun and Quentin Gomes De Pinho and Marie-Claude Lagouanelle and Aude Ansel-Wallois and Lila Camps and Shani Diai and Gilles Kaplanski and Audrey Benyamine and Brigitte Granel},
  journal = {BMJ Open},
  year = {2026},
  month = oct,
  doi = {10.1136/bmjopen-2025-115738},
  url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2025-115738},
  note = {CC BY-NC 4.0},
}
RIS
TY  - JOUR
TI  - Health literacy level and influencing factors among the French Scleroderma Association (ASF) members: a cross-sectional survey
AU  - Magali Le Brun
AU  - Quentin Gomes De Pinho
AU  - Marie-Claude Lagouanelle
AU  - Aude Ansel-Wallois
AU  - Lila Camps
AU  - Shani Diai
AU  - Gilles Kaplanski
AU  - Audrey Benyamine
AU  - Brigitte Granel
PY  - 2026
DA  - 2026/10/22
JO  - BMJ Open
DO  - 10.1136/bmjopen-2025-115738
UR  - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2025-115738
AB  - Objectives Health literacy (HL) refers to the ability to access, evaluate, apply and communicate information to promote, maintain and improve one’s health. Our primary objective was to assess HL level among the French Scleroderma Association (ASF) members using two validated questionnaires, FCCHL14 (Functional, Communicative and Critical Health Literacy scale 14) and HLS-EU16 (European Health Literacy Survey Questionnaire). The secondary objectives were to identify factors associated with HL and to explore the correlation between the two HL questionnaires.Design We conducted a cross-sectional study based on self-administered online questionnaires.Setting Systemic sclerosis (SSc) patients were recruited among adherent members to the ASF, via their electronic newsletter.Participants We included ASF members who completed the study and both self-administered HL questionnaires, provided that they had no more than two missing answers on each form. This represented 296 patients of whom 89% were women with an average age of 63.Interventions The questionnaires were available online for 3.5 months. The total estimated time to answer the 57 questions was about 35 min. Anonymous data were collected using LimeSurvey software.Primary and secondary outcome measures Descriptive analyses were performed to assess the population characteristics and the HL level. The FCCHL14 questionnaire was interpreted as a continuous variable whereas HLS-EU16 score determined three levels of HL (insufficient, average and satisfactory). Comparisons were made between HL scores based on patient characteristics. Secondary, potential associated factors were included in a multivariate analysis with an alpha threshold at 0.05. Spearman’s correlation coefficient was used to state correlation between the two HL scores.Results The studied population demonstrated an excellent proficiency in French language for 69% of cases, a high level of education for 64% and high social status for 48%. Patients were mainly followed at an expert centre in autoimmune diseases (58%). The FCCHL14 questionnaire indicated an excellent global, FCCHL with a mean global score of 11.3/15. HLS-EU-Q16 showed insufficient HL in 26.7%, average in 30.4% and satisfactory in 43%. FCCHL14 score was higher among women (p=0.034), people declaring affluent social status (p=0.028) and with a higher study level (p<0.01). HL according to HLS-EU-Q16 was associated with an excellent social status (p=0.044), proficiency in French (p=0.018) and level of information about SSc (p<0.001).Conclusions In this study, ASF members had adequate HL level assessed with two French validated HL questionnaires. A better HL was associated with female sex, a good social status, higher study level and an excellent French language skill. Moreover, adequate HL was associated with a high level of knowledge about SSc and with a follow-up in expert centres.This study has recruitment and self-selection biases since it only concerns patients who are ASF members and, by definition, motivated to learn more on their disease, and with access to a high level of information. Thus, these results cannot be generalised to the entire population suffering from SSc in France.
SN  - 2044-6055
SN  - 2044-6055
ER  -