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甲氨蝶呤治疗的患者在门诊需要和期望什么?一项在线患者调查。

What do patients on methotrexate need and expect at the clinic? An online patient survey.

机构信息

Instituto de Salud Musculoesquelética (InMusc), Ofelia Nieto, 10, 28039, Madrid, Spain.

Hospital Universitario Puerta de Hierro-Majadahonda, Madrid, Spain.

出版信息

Rheumatol Int. 2023 Apr;43(4):735-741. doi: 10.1007/s00296-022-05249-3. Epub 2022 Nov 27.

Abstract

To verify, via a survey, the experience and needs of patients receiving methotrexate (MTX), their general management and the quality of the information provided by the rheumatologist. We conducted a 51-item online survey between May and July 2020 addressed to persons diagnosed with an immune-mediated disease and treated with MTX (regardless of the route of administration). Recruitment was done via Twitter. We obtained 294 responses, of which 283 were complete and could be analysed. Almost 82% of the respondents were women, 80% resided in Spain, 75% were between 31 and 60 years old, and 57% were active workers. Diseases included psoriasis (41%), lupus, Sjögren's or vasculitides (33%), and rheumatoid arthritis (16%), among others. Eighty per cent had read the leaflet inserted in the package, of whom 62% found it helpful. Only 15% of the respondents reported having been offered additional written material, which was considered barely functional (33 out of 100). Most patients (88%) responded that they had not received advice on any reliable sources to consult on the internet, and those who received it considered it unhelpful (24 out of 100). Patients receiving MTX due to an autoimmune disease demand more and better-quality written or web-based information than what is currently offered at their clinics.

摘要

为了验证,我们通过调查,了解了接受甲氨蝶呤(MTX)治疗的患者的经验和需求、他们的一般管理情况以及风湿病医生提供的信息质量。我们于 2020 年 5 月至 7 月期间通过 Twitter 进行了一项包含 51 个问题的在线调查,调查对象为诊断患有免疫介导性疾病且接受 MTX 治疗(无论给药途径如何)的患者。我们共收到 294 份回复,其中 283 份完整,可以进行分析。近 82%的受访者为女性,80%居住在西班牙,75%年龄在 31 至 60 岁之间,57%为在职人员。所患疾病包括银屑病(41%)、狼疮、干燥综合征或血管炎(33%)和类风湿关节炎(16%)等。80%的受访者阅读过药袋中的说明书,其中 62%认为有用。仅有 15%的受访者报告说他们获得了额外的书面材料,但认为这些材料几乎没有作用(满分 100 分,仅得 33 分)。大多数患者(88%)表示,他们没有得到关于可在互联网上查阅的可靠来源的建议,而收到建议的患者认为这些建议没有帮助(满分 100 分,仅得 24 分)。因自身免疫性疾病而接受 MTX 治疗的患者要求获得比诊所目前提供的更多且质量更高的书面或基于网络的信息。

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