Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers
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 participat...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-02-01
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| Series: | Journal of Clinical Medicine |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2077-0383/12/4/1359 |
| _version_ | 1797620194637512704 |
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| author | Quentin Kirren Camille Daste Frantz Foissac Hendy Abdoul Sophie Alami Marie-Eve Carrier Linda Kwakkenbos Marie-Martine Lefèvre-Colau François Rannou Agathe Papelard Alexandra Roren Brett D. Thombs Luc Mouthon Christelle Nguyen |
| author_facet | Quentin Kirren Camille Daste Frantz Foissac Hendy Abdoul Sophie Alami Marie-Eve Carrier Linda Kwakkenbos Marie-Martine Lefèvre-Colau François Rannou Agathe Papelard Alexandra Roren Brett D. Thombs Luc Mouthon Christelle Nguyen |
| author_sort | Quentin Kirren |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-11T08:38:37Z |
| format | Article |
| id | doaj.art-59d33ba322094176ba64db93f49ab1b1 |
| institution | Directory Open Access Journal |
| issn | 2077-0383 |
| language | English |
| last_indexed | 2024-03-11T08:38:37Z |
| publishDate | 2023-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Clinical Medicine |
| spelling | doaj.art-59d33ba322094176ba64db93f49ab1b12023-11-16T21:18:27ZengMDPI AGJournal of Clinical Medicine2077-03832023-02-01124135910.3390/jcm12041359Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care ProvidersQuentin Kirren0Camille Daste1Frantz Foissac2Hendy Abdoul3Sophie Alami4Marie-Eve Carrier5Linda Kwakkenbos6Marie-Martine Lefèvre-Colau7François Rannou8Agathe Papelard9Alexandra Roren10Brett D. Thombs11Luc Mouthon12Christelle Nguyen13UFR de Médecine, Faculté de Santé, Université Paris Cité, 75006 Paris, FranceUFR de Médecine, Faculté de Santé, Université Paris Cité, 75006 Paris, FranceUnité de Recherche Clinique—Centre d’Investigation Clinique Paris Descartes Necker/Cochin, Hôpital Tarnier, 75014 Paris, FranceUnité de Recherche Clinique—Centre d’Investigation Clinique Paris Descartes Necker/Cochin, Hôpital Tarnier, 75014 Paris, FranceCabinet d’Études Sociologiques Interlis, 75006 Paris, FranceLady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC H3T 1E2, CanadaBehavioural Science Institute, Clinical Psychology, Radboud University Nijmegen, 6525 XZ Nijmegen, The NetherlandsUFR de Médecine, Faculté de Santé, Université Paris Cité, 75006 Paris, FranceUFR de Médecine, Faculté de Santé, Université Paris Cité, 75006 Paris, FranceService de Rééducation et de Réadaptation de l’Appareil Locomoteur et des Pathologies du Rachis, Hôpital Cochin, AP-HP, Centre-Université Paris Cité, 75014 Paris, FranceService de Rééducation et de Réadaptation de l’Appareil Locomoteur et des Pathologies du Rachis, Hôpital Cochin, AP-HP, Centre-Université Paris Cité, 75014 Paris, FranceLady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC H3T 1E2, CanadaUFR de Médecine, Faculté de Santé, Université Paris Cité, 75006 Paris, FranceUFR de Médecine, Faculté de Santé, Université Paris Cité, 75006 Paris, FranceDifferences 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.https://www.mdpi.com/2077-0383/12/4/1359systemic sclerosisdisabilityactivity limitationspatient-reported outcomes |
| spellingShingle | Quentin Kirren Camille Daste Frantz Foissac Hendy Abdoul Sophie Alami Marie-Eve Carrier Linda Kwakkenbos Marie-Martine Lefèvre-Colau François Rannou Agathe Papelard Alexandra Roren Brett D. Thombs Luc Mouthon Christelle Nguyen Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers Journal of Clinical Medicine systemic sclerosis disability activity limitations patient-reported outcomes |
| title | Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers |
| title_full | Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers |
| title_fullStr | Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers |
| title_full_unstemmed | Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers |
| title_short | Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers |
| title_sort | differences in disability perception in systemic sclerosis a mirror survey of patients and health care providers |
| topic | systemic sclerosis disability activity limitations patient-reported outcomes |
| url | https://www.mdpi.com/2077-0383/12/4/1359 |
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