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银屑病关节炎患者的意识、观点和满意度:一项多中心横断面调查。

Awareness, perspectives and satisfaction levels among patients with psoriatic arthritis: a multicentric cross-sectional survey.

机构信息

Tricolour Hospitals, Vadiwadi, Sarabhai Complex, Vadodara, Gujarat, 390007, India.

Care Pain and Arthritis Centre, Udaipur, India.

出版信息

Rheumatol Int. 2023 Aug;43(8):1531-1539. doi: 10.1007/s00296-023-05339-w. Epub 2023 May 13.

Abstract

Perception of the disease and its management impacts patients with Psoriatic arthritis (PsA) to a great degree. Studies examining patients' viewpoints and perception of their disease and its management are scarce. This multicentric cross-sectional survey was undertaken to understand the perspectives of patients with PsA. A survey questionnaire with items on demographics, awareness about their disease, treatment, physical therapy, quality of life and satisfaction with the care received was designed. After internal and external validation, a pilot survey was conducted, and the questionnaire was finalized. The final survey (with translations in local languages) was carried out at 17 centres across India. There were 262 respondents (56% males) with mean age of 45.14 ± 12.89 years. In 40%, the time lag between onset of symptoms and medical assessment for it was more than a year. In most of the patients, the diagnosis of PsA was made by a rheumatologist. Over 83% of patients were consulting their rheumatologist periodically as advised and fully compliant with the treatment. Lack of time and cost of therapy were the most common reasons for non-adherence to therapy. Eighty-eight patients (34%) were not fully satisfied with their current treatment. Over two-third of patients had never seen a physiotherapist due to barriers including a lack of time, pain, and fatigue. The daily activities and employment status were affected in nearly 50% of patients with PsA. The current survey has identified a gap in patients' awareness levels and helps healthcare providers in understanding the varied perceptions of patients with PsA. Addressing these issues in a systematic manner would potentially improve the treatment approaches, outcomes, and patient satisfaction levels.

摘要

疾病认知及其管理对患有银屑病关节炎(PsA)的患者影响极大。研究检查患者对疾病及其管理的观点和看法的研究很少。本多中心横断面调查旨在了解 PsA 患者的观点。设计了一份调查问卷,内容包括人口统计学、对自身疾病的认识、治疗、物理治疗、生活质量和对所接受护理的满意度等方面的问题。经过内部和外部验证后,进行了试点调查,并最终确定了问卷。最终的调查(附有当地语言的翻译)在印度的 17 个中心进行。共有 262 名受访者(56%为男性),平均年龄为 45.14±12.89 岁。40%的患者从出现症状到接受医疗评估的时间超过一年。在大多数患者中,银屑病关节炎的诊断是由风湿病医生做出的。超过 83%的患者按照建议定期咨询风湿病医生,并完全遵守治疗方案。缺乏时间和治疗费用是不遵守治疗方案的最常见原因。88 名(34%)患者对当前治疗方案不完全满意。由于缺乏时间、疼痛和疲劳等障碍,超过三分之二的患者从未见过物理治疗师。由于各种原因,近 50%的患者的日常活动和就业状况受到影响。本次调查发现了患者意识水平的差距,有助于医疗保健提供者了解不同患者对银屑病关节炎的看法。以系统的方式解决这些问题,可能会改善治疗方法、结果和患者满意度。

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