Kirren Quentin, Daste Camille, Foissac Frantz, Abdoul Hendy, Alami Sophie, Carrier Marie-Eve, Kwakkenbos Linda, Lefèvre-Colau Marie-Martine, Rannou François, Papelard Agathe, Roren Alexandra, Thombs Brett D, Mouthon Luc, Nguyen Christelle
UFR de Médecine, Faculté de Santé, Université Paris Cité, 75006 Paris, France.
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.
J Clin Med. 2023 Feb 8;12(4):1359. doi: 10.3390/jcm12041359.
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.
患者与医护人员对残疾的认知差异可能会影响治疗结果。我们旨在探讨系统性硬化症（SSc）患者与医护人员在残疾认知方面的差异。我们开展了一项基于互联网的横断面镜像调查。使用科钦硬皮病国际功能、残疾和健康分类（ICF）-65问卷对参与在线SPIN队列研究的SSc患者以及隶属于15个科学协会的医护人员进行了调查，该问卷包含65个项目（从0到10），代表9个残疾领域。计算了患者与医护人员之间的平均差异。在多变量分析中评估了与平均差异≥2（满分10分）相关的医护人员特征。对109名患者和105名医护人员的回答进行了分析。患者的平均年龄为55.9（14.7）岁，病程为10.1（7.5）年。对于ICF-65的所有领域，医护人员的评分均高于患者。平均差异为满分10分中的2.4（1.0）分。与这种差异相关的医护人员特征包括基于器官的专业（比值比[OR]=7.0[2.3 - 21.2]）、年龄较小（OR = 2.7[1.0 - 7.1]）以及随访病程≥5年的患者（OR = 3.0[1.1 - 8.7]）。我们发现SSc患者与医护人员在残疾认知方面存在系统性差异。
