Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers

Author:

Kirren Quentin12,Daste Camille123ORCID,Foissac Frantz45ORCID,Abdoul Hendy4,Alami Sophie6,Carrier Marie-Eve7,Kwakkenbos Linda8,Lefèvre-Colau Marie-Martine123,Rannou François129,Papelard Agathe2,Roren Alexandra2310,Thombs Brett D.7111213141516ORCID,Mouthon Luc117,Nguyen Christelle129ORCID

Affiliation:

1. UFR de Médecine, Faculté de Santé, Université Paris Cité, 75006 Paris, France

2. Service de Rééducation et de Réadaptation de l’Appareil Locomoteur et des Pathologies du Rachis, Hôpital Cochin, AP-HP, Centre-Université Paris Cité, 75014 Paris, France

3. INSERM UMR-S 1153, Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité, Université Paris Cité, 75004 Paris, France

4. Unité de Recherche Clinique—Centre d’Investigation Clinique Paris Descartes Necker/Cochin, Hôpital Tarnier, 75014 Paris, France

5. EA 7323, Évaluation des Thérapeutiques et Pharmacologie Périnatale et Pédiatrique, Université Paris Cité, 75014 Paris, France

6. Cabinet d’Études Sociologiques Interlis, 75006 Paris, France

7. Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC H3T 1E2, Canada

8. Behavioural Science Institute, Clinical Psychology, Radboud University Nijmegen, 6525 XZ Nijmegen, The Netherlands

9. INSERM UMR-S 1124, Toxicité Environnementale, Cibles Thérapeutiques, Signalisation Cellulaire et Biomarqueurs (T3S), Campus Saint-Germain-des-Prés, Université Paris Cité, 75006 Paris, France

10. Département Universitaire des Sciences de la Rééducation et de la Réadaptation, Faculté de Santé, Université Paris Cité, 75006 Paris, France

11. Departments of Psychiatry, McGill University, Montreal, QC H3A 1G1, Canada

12. Departments of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC H3A 1G1, Canada

13. Departments of Medicine, McGill University, Montreal, QC H3A 1G1, Canada

14. Departments of Psychology, McGill University, Montreal, QC H3A 1G1, Canada

15. Departments of Educational and Counselling Psychology, McGill University, Montreal, QC H3A 1G1, Canada

16. Biomedical Ethics Unit, McGill University, Montreal, QC H3A 1G1, Canada

17. Service de Médecine Interne, Hôpital Cochin, AP-HP, Centre-Université de Paris, 75014 Paris, France

Abstract

Differences in disability perception between patients and care providers may impact outcomes. We aimed to explore differences in disability perception between patients and care providers in systemic sclerosis (SSc). We conducted a cross-sectional internet-based mirror survey. SSc patients participating in the online SPIN Cohort and care providers affiliated with 15 scientific societies were surveyed using the Cochin Scleroderma International Classification of Functioning, Disability and Health (ICF)-65 questionnaire, including 65 items (from 0 to 10), representing 9 domains of disability. Mean differences between patients and care providers were calculated. Care providers’ characteristics associated with a mean difference ≥ 2 of 10 points were assessed in multivariate analysis. Answers were analyzed for 109 patients and 105 care providers. The mean age of patients was 55.9 (14.7) years and the disease duration was 10.1 (7.5) years. For all domains of the ICF-65, care providers’ rates were higher than those of patients. The mean difference was 2.4 (1.0) of 10 points. Care providers’ characteristics associated with this difference were organ-based specialty (OR = 7.0 [2.3–21.2]), younger age (OR = 2.7 [1.0–7.1]) and following patients with disease duration ≥5 years (OR = 3.0 [1.1–8.7]). We found systematic differences in disability perception between patients and care providers in SSc.

Funder

French Society of Rheumatology

Groupe Francophone de Recherche sur la Sclérodermie

Tier 1 Canada Research Chair

Publisher

MDPI AG

Subject

General Medicine

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