Division of Clinical Rheumatology, ASST Pini-CTO, Milano, Italy.
Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, Research Center for Environmental Health, Università degli Studi di Milano, Milano, Italy.
Int J Rheum Dis. 2020 Oct;23(10):1305-1310. doi: 10.1111/1756-185X.13932. Epub 2020 Aug 5.
The research approach on rheumatic musculoskeletal diseases (RMDs) is challenging and patient involvement is an emerging issue to obtain relevant information to research. Despite growing interest in non-pharmacologic aspects of clinical research in RMDs, the patients' perspectives are currently poorly explored.
A cross-sectional no-profit online survey was devised to identify and rank the priorities for clinical research in RMDs according to patients' perspectives. Patients were asked to rate the following topics: food/nutrition, air pollution, smoking, work activity, social participation, physical activity, emotional well-being/stress, alternative medicine, and patient-physician relationship. The survey was disseminated by ALOMAR (Lombard Association for Rheumatic Diseases) between June and October 2019.
Two hundred RMD patients completed the survey. The topic most rated 188 (94%) was the doctor-patient relationship, considered very or extremely important. Other topics rated as follows: psychological well-being 185 (92.5%), physical activity 155 (77.5%), nutrition, eating habits 150 (75%), alternative therapies 144 (72%), work activity 144 (72%), environmental pollution 134 (67%), social life 121 (60.5%) and cigarette smoke 119 (59.5%). The topics considered relevant were perceived to be able to influence disease symptoms. Environmental pollution and smoking were considered the most important for RMD prevention in 43.3% and 48.7% respectively.
This survey highlights the relevance of several unmet needs and indicates that active patient involvement is essential to design successful translational studies and improve clinical outcomes.
风湿性肌肉骨骼疾病(RMDs)的研究方法具有挑战性,患者参与是获取与研究相关信息的新兴问题。尽管人们对 RMDs 临床研究的非药物方面越来越感兴趣,但目前对患者观点的探索还很不足。
设计了一项横断面非营利性在线调查,根据患者的观点确定并对 RMDs 的临床研究重点进行排名。患者被要求对以下主题进行评分:食物/营养、空气污染、吸烟、工作活动、社会参与、体育活动、情绪健康/压力、替代医学和医患关系。该调查由 ALOMAR(伦巴第风湿病协会)于 2019 年 6 月至 10 月间进行传播。
共有 200 名 RMD 患者完成了调查。188 名(94%)患者将医生-患者关系评为最重要或非常重要的主题。其他被评为重要的主题包括:心理健康 185 名(92.5%)、体育活动 155 名(77.5%)、营养、饮食习惯 150 名(75%)、替代疗法 144 名(72%)、工作活动 144 名(72%)、环境污染 134 名(67%)、社会生活 121 名(60.5%)和香烟烟雾 119 名(59.5%)。认为相关的主题被认为能够影响疾病症状。43.3%的患者认为环境污染,48.7%的患者认为吸烟是 RMD 预防的最重要因素。
本调查突出了一些未满足需求的相关性,并表明积极的患者参与对于设计成功的转化研究和改善临床结果至关重要。