炎症性关节病患者的生活质量与未满足需求：多中心观察性RAPSODIA研究结果
Quality of life and unmet needs in patients with inflammatory arthropathies: results from the multicentre, observational RAPSODIA study.
作者信息
Giacomelli Roberto, Gorla Roberto, Trotta Francesco, Tirri Rosella, Grassi Walter, Bazzichi Laura, Galeazzi Mauro, Matucci-Cerinic Marco, Scarpa Raffaele, Cantini Fabrizio, Gerli Roberto, Lapadula Giovanni, Sinigaglia Luigi, Ferraccioli Gianfranco, Olivieri Ignazio, Ruscitti Piero, Sarzi-Puttini Piercarlo
机构信息
Rheumatology Unit, Department of Biotechnological and Applied Clinical Science, School of Medicine, University of L'Aquila, L'Aquila, Rheumatology Unit, University of Brescia, Brescia, Rheumatology Unit, University of Ferrara, Ferrara, Rheumatology Unit of the Second University of Naples, Naples, Rheumatology Unit, Polytechnic University of the Marche, Jesi, Ancona, Rheumatology Unit, Department of Internal Medicine, University of Pisa, Pisa, Rheumatology Unit, Department of Clinical Medicine and Immunological Science, University of Siena, Siena, Division of Rheumatology, Department of Biomedicine, University of Florence, Florence, Rheumatology Unit, Department of Clinical and Experimental Medicine, University Federico II, Naples, Division of Rheumatology, Misericordia e Dolce Hospital, Prato, Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Rheumatology Unit, University of Bari, Bari, Rheumatology Unit, G Pini Hospital, Milan, Division of Rheumatology, Institute of Rheumatology and Affine Sciences, School of Medicine, Catholic University of the Sacred Heart, Rome, Rheumatology Department of Lucania, San Carlo Hospital of Potenza and Madonna delle Grazie Hospital of Matera, Matera and Rheumatology Unit, L. Sacco University Hospital, Milan, Italy
Rheumatology Unit, Department of Biotechnological and Applied Clinical Science, School of Medicine, University of L'Aquila, L'Aquila, Rheumatology Unit, University of Brescia, Brescia, Rheumatology Unit, University of Ferrara, Ferrara, Rheumatology Unit of the Second University of Naples, Naples, Rheumatology Unit, Polytechnic University of the Marche, Jesi, Ancona, Rheumatology Unit, Department of Internal Medicine, University of Pisa, Pisa, Rheumatology Unit, Department of Clinical Medicine and Immunological Science, University of Siena, Siena, Division of Rheumatology, Department of Biomedicine, University of Florence, Florence, Rheumatology Unit, Department of Clinical and Experimental Medicine, University Federico II, Naples, Division of Rheumatology, Misericordia e Dolce Hospital, Prato, Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Rheumatology Unit, University of Bari, Bari, Rheumatology Unit, G Pini Hospital, Milan, Division of Rheumatology, Institute of Rheumatology and Affine Sciences, School of Medicine, Catholic University of the Sacred Heart, Rome, Rheumatology Department of Lucania, San Carlo Hospital of Potenza and Madonna delle Grazie Hospital of Matera, Matera and Rheumatology Unit, L. Sacco University Hospital, Milan, Italy.
出版信息
Rheumatology (Oxford). 2015 May;54(5):792-7. doi: 10.1093/rheumatology/keu398. Epub 2014 Oct 6.
OBJECTIVE
The observational RAPSODIA (RA, PsA and spondylitis including AS) study was planned to assess, in patients with RA, AS and PsA, their involvement in medical decisions, quality of life and unmet needs 15 years after the introduction of biologic therapies in Italy.
METHODS
Patients completed a questionnaire during their scheduled rheumatology consultation. They rated their satisfaction with disease knowledge on a 5-point scale (1 = not at all satisfied, 5 = totally satisfied). Self-efficacy, defined as judgement of one's own ability to achieve given levels of performance and exercise control over events, was measured using the pain subscale of the Arthritis Self-Efficacy Scale. Patients' global assessments of pain, fatigue and disease activity were recorded on 100 mm visual analogue scales (0 = best status, 100 = worse status). Disease activity status was assessed using standard tools. Health status was measured using the 36-item Short Form Health Survey and the Italian version of the HAQ.
RESULTS
Ninety-eight per cent of patients reported that their health care practitioner used understandable terms to explain their condition. Joint issues and general symptoms (e.g. fatigue and malaise) were common. All measures of disease activity and self-efficacy scores were markedly better in patients receiving biologic vs conventional therapy. Biologic therapy recipients were more productive at work.
CONCLUSION
These results confirm that some patients with rheumatic diseases are not satisfied with the level of information they receive about their treatments. Biologic therapy appears to be an important advance, with patients receiving this form of treatment having improved symptoms and productivity. However, patients still report unmet needs. Thus further research, and perhaps new and more effective therapies, along with better education and multidisciplinary collaboration, are required to improve outcomes.
目的
观察性RAPSODIA（类风湿关节炎、银屑病关节炎和脊柱关节炎包括强直性脊柱炎）研究旨在评估在意大利引入生物疗法15年后，类风湿关节炎、强直性脊柱炎和银屑病关节炎患者参与医疗决策的情况、生活质量和未满足的需求。
方法
患者在定期的风湿病咨询期间完成一份问卷。他们用5分制对疾病知识的满意度进行评分（1 = 一点也不满意，5 = 完全满意）。自我效能感定义为对自己实现给定表现水平和控制事件能力的判断，使用关节炎自我效能量表的疼痛子量表进行测量。患者对疼痛、疲劳和疾病活动的总体评估用100毫米视觉模拟量表记录（0 = 最佳状态，100 = 最差状态）。疾病活动状态使用标准工具进行评估。健康状况使用36项简短健康调查问卷和意大利版健康评估问卷进行测量。
结果
98%的患者报告称其医护人员用易懂的术语解释他们的病情。关节问题和一般症状（如疲劳和不适）很常见。接受生物疗法的患者在所有疾病活动指标和自我效能感评分方面均明显优于接受传统疗法的患者。接受生物疗法的患者工作效率更高。
结论
这些结果证实，一些风湿病患者对他们所获得的治疗信息水平不满意。生物疗法似乎是一项重要进展，接受这种治疗形式的患者症状得到改善，工作效率提高。然而，患者仍报告有未满足的需求。因此，需要进一步研究，或许还需要新的、更有效的疗法，以及更好的教育和多学科协作，以改善治疗效果。
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