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英国硬皮病与雷诺病协会(SRUK)开展的一项全国性调查,旨在探究风湿病专家对系统性硬化症的认知、诊断和管理方法以及培训需求。

A Scleroderma and Raynaud's UK (SRUK) national survey to explore rheumatologists' awareness, approaches to diagnosis and management and training needs within systemic sclerosis.

作者信息

Blamont Emma, Farrington Sue, Glover-Southworth Nina, Cornwell Gemma, Gibson Laura, Sloan Melanie, Hughes Michael

机构信息

Scleroderma and Raynaud's UK, London, UK.

Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.

出版信息

Rheumatol Adv Pract. 2024 Dec 20;9(1):rkae152. doi: 10.1093/rap/rkae152. eCollection 2025.

DOI:10.1093/rap/rkae152
PMID:39830596
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11739612/
Abstract

OBJECTIVES

Patients' outcomes and experiences can be affected by rheumatologist knowledge and awareness of systemic sclerosis (SSc). Our survey, directed at UK-based rheumatologists, aimed to expand our understanding of the above points along with their ability to keep up to date with guidelines defining best practice.

METHODS

Rheumatologists were invited to participate in an online survey, with the results analysed and presented descriptively and graphically by SRUK.

RESULTS

Of the 150 UK rheumatologists surveyed, 2% reported that they had not heard of SSC and 18.7% reported having a limited understanding of the condition. A total of 44% of respondents reported that they were fully versed in the signs and symptoms of SSc. The majority of those surveyed shared the broad view that all aspects of SSc, including services (63.4%), specialist positions (64.7%), research (73.1%) and training and education (70%), are either completely or somewhat underfunded. Most respondents (87.4%) reported that their workload allowed them to 'somewhat' (48.74%) or 'completely' (38.66%) keep up to date with official guidelines. Scleroderma and Raynaud's UK (SRUK) (47.9%), followed by NICE (43.7%), were the most highly used sources of information utilized among those surveyed.

CONCLUSION

Our survey reveals a serious gap in the awareness and the signs and symptoms of SSc among some UK rheumatologists, in addition to a perception that services, training and education in this area are underfunded. Our findings indicate that there is a role for the provision of further education and training as part of continued professional development.

摘要

目的

患者的治疗结果和就医体验可能会受到风湿病学家对系统性硬化症(SSc)的了解程度和认知的影响。我们针对英国风湿病学家开展的这项调查,旨在加深我们对上述要点的理解,以及他们紧跟定义最佳实践的指南的能力。

方法

邀请风湿病学家参与一项在线调查,英国风湿病学会(SRUK)对结果进行分析,并以描述性和图表形式呈现。

结果

在接受调查的150名英国风湿病学家中,2%报告称他们从未听说过SSc,18.7%报告对该病了解有限。共有44%的受访者表示他们对SSc的体征和症状了如指掌。大多数受访者普遍认为,SSc的各个方面,包括服务(63.4%)、专科职位(64.7%)、研究(73.1%)以及培训与教育(70%),要么完全缺乏资金支持,要么资金支持有所不足。大多数受访者(87.4%)报告称他们的工作量使他们能够“部分地”(48.74%)或“完全地”(38.66%)紧跟官方指南。在接受调查者中,英国硬皮病和雷诺病协会(SRUK)(47.9%)是使用最多的信息来源,其次是英国国家卫生与临床优化研究所(NICE)(43.7%)。

结论

我们的调查显示,一些英国风湿病学家在对SSc的认知以及体征和症状方面存在严重差距,此外,他们还认为该领域的服务、培训和教育资金不足。我们的研究结果表明,作为持续专业发展的一部分,提供进一步的教育和培训具有重要意义。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/a252ec211781/rkae152f5.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/55f7f6ab87c1/rkae152f1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/94a536c5a69b/rkae152f2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/df6fce5cf982/rkae152f3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/a439967a5e79/rkae152f4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/a252ec211781/rkae152f5.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/55f7f6ab87c1/rkae152f1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/94a536c5a69b/rkae152f2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/df6fce5cf982/rkae152f3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/a439967a5e79/rkae152f4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1df3/11739612/a252ec211781/rkae152f5.jpg

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本文引用的文献

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Management of systemic sclerosis: British Society for Rheumatology guideline scope.系统性硬化症的管理:英国风湿病学会指南范围
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Systemic sclerosis.系统性硬化症
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