Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers
Abstract
1. Introduction
2. Materials and Methods
3. Results
4. Discussion
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Care Providers’ Characteristics | n (%) |
---|---|
Age | |
• <25 years | 3 (3) |
• 25–34 years | 20 (19) |
• 35–44 years | 34 (32) |
• 45–54 years | 22 (21) |
• 55–64 years | 22 (21) |
• ≥65 years | 4 (4) |
Gender | |
• Women | 53 (50) |
• Men | 52 (50) |
Degree | |
• Graduated > 2 years | 87 (83) |
• Graduated ≤ 2 years | 10 (10) |
• Not graduated | 8 (7) |
Occupation | |
• Board-certified physicians | 82 (78) |
• Medical residents | 9 (8) |
• Physiotherapists | 7 (7) |
• Nurses | 4 (4) |
• Dental surgeons | 1 (1) |
• Occupational therapists | 1 (1) |
• Nursing assistants | 1 (1) |
Medical specialties | |
• Internal medicine | 57 (54) |
• Rheumatology | 20 (19) |
• Pulmonology | 11 (11) |
• Dermatology | 4 (4) |
• Physical and rehabilitation medicine | 3 (3) |
• Other | 3 (3) |
• Cardiovascular medicine | 1 (1) |
Predominant setting for practice | |
• Hospital | 60 (57) |
• Hospital and academia | 24 (23) |
• Academia | 14 (13) |
• Private practice | 4 (4) |
• Hospital and private practice | 1 (1) |
• Academia and private practice | 1 (1) |
• Other | 1 (1) |
Number of patients with limited cutaneous systemic sclerosis followed-up per year | |
• <50 patients | 75 (71) |
• 50–149 patients | 20 (19) |
• ≥150 patients | 5 (5) |
• Not applicable | 5 (5) |
Number of patients with diffuse cutaneous systemic sclerosis followed-up per year | |
• <50 patients | 92 (88) |
• 50–149 patients | 10 (9) |
• ≥150 patients | 1 (1) |
• Not applicable | 2 (2) |
Proportion of female patients followed-up per year | |
• <25% | 5 (5) |
• 25–50% | 6 (6) |
• 50–75% | 45 (43) |
• >75% | 49 (46) |
Patients’ mean disease duration | |
• <1 year | 0 (0) |
• 1–5 years | 33 (31) |
• 5–10 years | 63 (60) |
• >10 years | 9 (9) |
Patients’ mean age | |
• <25 years | 0 (0) |
• 25–34 years | 5 (5) |
• 35–44 years | 20 (19) |
• 45–54 years | 40 (38) |
• 55–64 years | 37 (35) |
• ≥65 years | 3 (3) |
Characteristics | |
---|---|
Women, n/N (%) | 98/109 (90) |
Age (years), mean (SD) | 55.9 (14.7) a |
Body mass index (kg/m2), mean (SD) | 23.0 (4.7) a |
Disease duration (years), mean (SD) | 10.1 (7.5) a |
Systemic sclerosis subset, n/N (%) | |
• Limited cutaneous | 57/109 (52) |
• Diffuse cutaneous | 41/109 (38) |
• Sine scleroderma | 8/109 (7) |
• Unspecified | 3/109 (3) |
Impairments, n/N (%) | |
• Modified Rodnan skin score (0 to 51), mean (SD) | 7.7 (8.4) b |
• Sclerodactylia, n/N (%) | 81/106 (76) |
• Telangectasias, n/N (%) | 66/107 (62) |
• Pulmonary fibrosis, n/N (%) | 45/107 (42) |
• Digital ulcer, n/N (%) | 44/107 (41) |
• Stiffness of small joints (fingers, wrists), n/N (%) | 35/104 (34) |
• Gastrointestinal tract involvement, n/N (%) | 31/106 (29) |
• Stiffness of large joints (elbows, hips, knees, ankles), n/N (%) | 21/103 (20) |
• Pulmonary arterial hypertension, n/N (%) | 7/107 (7) |
• Scleroderma renal crisis, n/N (%) | 6/107 (6) |
Activity limitations scores, mean (SD) | |
• Health Assessment Questionnaire (0 to 3), mean (SD) | 1.1 (0.8) |
• Scleroderma Health Assessment Questionnaire (0 to 3), mean (SD) | 1.0 (0.7) |
• Cochin Hand Function scale (0 to 90), mean (SD) | 18.0 (18.7) |
• Mouth Handicap in Systemic Sclerosis scale (0 to 48), mean (SD) | 19.0 (12.5) |
Mean (SD) Score in Patients (0–10) | Mean (SD) Score in Care Providers (0–10) | Mean (SD) Absolute Difference between Patients and Care Providers (0–10) | Care Providers with Mean Absolute Difference ≥2 of 10 Points, n/N (%) | |
---|---|---|---|---|
Cochin Scleroderma ICF-65 whole questionnaire (65 items) | 2.4 (0.8) | 4.4 (1.4) | 2.4 (1.0) | 64/105 (61) |
Cochin Scleroderma ICF-65 domains | ||||
• Self-care (6 items) | 1.6 (0.3) | 4.4 (1.8) | 2.9 (1.5) | 72/105 (68) |
• Domestic life (5 items) | 2.7 (0.4) | 5.4 (1.8) | 2.8 (1.5) | 72/105 (68) |
• Mobility (18 items) | 2.7 (0.9) | 4.8 (1.5) | 2.4 (1.1) | 62/105 (59) |
• Community, social and civic life (6 items) | 3.3 (1.1) | 5.4 (1.7) | 2.4 (1.2) | 61/105 (55) |
• Communication (4 items) | 1.2 (0.1) | 2.8 (1.6) | 2.2 (1.2) | 55/105 (52) |
• General tasks and demands (8 items) | 2.6 (0.5) | 4.2 (1.8) | 2.2 (1.2) | 55/105 (52) |
• Learning and applying knowledge (4 items) | 2.1 (0.5) | 3.5 (1.7) | 2.1 (1.0) | 53/105 (46) |
• Interpersonal interactions and relationships (9 items) | 2.6 (0.2) * | 2.0 (1.7) * | Not analyzable | Not analyzable |
• Major life areas (5 items) | 2.6 (0.2) ** | 4.9 (2.0) ** | Not analyzable | Not analyzable |
N (%) | Care Providers with Mean Absolute Difference < 2/10 (n = 41) | Care Providers with Mean Absolute Difference ≥ 2/10 (n = 64) | p-Value * |
---|---|---|---|
Age ≥ 45 years | 22 (54) | 26 (41) | 0.23 |
Women | 18 (44) | 35 (55) | 0.32 |
Graduated > 2 years | 36 (88) | 51 (80) | 0.62 |
Organ-based specialty | 6 (15) | 30 (47) | <0.01 |
≥50 patients with DcSSc followed-up a year | 5 (12) | 6 (9) | 0.88 |
≥50 patients with LcSSc followed-up a year | 14 (34) | 11 (17) | 0.12 |
Patients with mean disease duration ≥ 5 years | 26 (63) | 46 (72) | 0.39 |
Care Providers’ Characteristics | OR | 95% Confidence Interval | p-Value * |
---|---|---|---|
Organ-based specialty | 7.0 | 2.3–21.2 | <0.001 |
Following patients with mean disease duration ≥ 5 years | 3.0 | 1.1–8.7 | 0.04 |
≥50 patients with DcSSc or LcSSc followed-up a year versus < 50 patients | 0.4 | 0.1–1.5 | 0.18 |
≥50 patients with DcSSc and LcSSc followed-up a year versus < 50 patients | 0.4 | 0.1–2.0 | 0.27 |
Age < 45 years | 2.7 | 1.0–7.1 | 0.04 |
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Kirren, Q.; Daste, C.; Foissac, F.; Abdoul, H.; Alami, S.; Carrier, M.-E.; Kwakkenbos, L.; Lefèvre-Colau, M.-M.; Rannou, F.; Papelard, A.; et al. Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers. J. Clin. Med. 2023, 12, 1359. https://doi.org/10.3390/jcm12041359
Kirren Q, Daste C, Foissac F, Abdoul H, Alami S, Carrier M-E, Kwakkenbos L, Lefèvre-Colau M-M, Rannou F, Papelard A, et al. Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers. Journal of Clinical Medicine. 2023; 12(4):1359. https://doi.org/10.3390/jcm12041359
Chicago/Turabian StyleKirren, Quentin, Camille Daste, Frantz Foissac, Hendy Abdoul, Sophie Alami, Marie-Eve Carrier, Linda Kwakkenbos, Marie-Martine Lefèvre-Colau, François Rannou, Agathe Papelard, and et al. 2023. "Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers" Journal of Clinical Medicine 12, no. 4: 1359. https://doi.org/10.3390/jcm12041359
APA StyleKirren, Q., Daste, C., Foissac, F., Abdoul, H., Alami, S., Carrier, M.-E., Kwakkenbos, L., Lefèvre-Colau, M.-M., Rannou, F., Papelard, A., Roren, A., Thombs, B. D., Mouthon, L., & Nguyen, C. (2023). Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers. Journal of Clinical Medicine, 12(4), 1359. https://doi.org/10.3390/jcm12041359