Institute of Infection, Immunity and Inflammation, University of Glasgow, Glasgow, UK.
Department of Rheumatology, Norfolk and Norwich University Hospital, Norwich, UK.
Rheumatology (Oxford). 2018 Jun 1;57(6):987-996. doi: 10.1093/rheumatology/kex518.
There have been significant advances in axial spondyloarthritis (axSpA), with implications for service delivery. We evaluated the state of axSpA rheumatology services and how people with axSpA perceive their care.
An online patient survey was emailed to all members of the National Ankylosing Spondylitis Society and advertised widely via social media. Separately, a Web-based questionnaire about axSpA services was sent to rheumatologists at all 172 acute hospital trusts in the UK.
From the National Ankylosing Spondylitis Society survey, data for 1979 surveys (56% males) were available for analysis. The majority of respondents had longstanding disease and identified their diagnosis as AS, with only 44% aware of the term axSpA. Eighty-two per cent of respondents were currently attending a rheumatologist, with 43% on biologic agents. Satisfaction scores for rheumatology care were high. Respondents' concerns included access during disease flares and adverse effects of analgesics. From the rheumatology survey, the concept and terminology of axSpA was widely accepted by respondents (88%). The majority of centres had at least one rheumatologist with a specialist interest in axSpA (62%), dedicated axSpA clinics (58%) or a multidisciplinary team for axSpA (64%). BASDAI (99%), BASFI (74%) and BASMI (65%) were routinely performed. All centres had access to MRI scans, but scanning protocols varied and were often sub-optimal.
Although overall satisfaction with rheumatology care was high, the results indicate significant unmet patient needs and discrepancies in service provision. This information will inform the development of quality standards for axSpA in order to improve quality and deliver equitable care for all patients.
轴性脊柱关节炎（axSpA）领域取得了重大进展，这对服务提供具有重要意义。我们评估了 axSpA 风湿病服务的现状以及 axSpA 患者对自身护理的看法。
我们向全国强直性脊柱炎协会的所有成员发送了在线患者调查，并通过社交媒体广泛宣传。此外，我们还向英国所有 172 家急症医院信托基金的风湿病医生发送了一份关于 axSpA 服务的网络问卷。
从全国强直性脊柱炎协会的调查中，我们获得了 1979 份调查（56%为男性）的数据进行分析。大多数受访者的疾病病史较长，他们将自己的诊断确定为 AS，只有 44%的人了解 axSpA 这一术语。82%的受访者目前正在接受风湿病医生的治疗，其中 43%的人正在使用生物制剂。风湿病护理的满意度评分很高。受访者的担忧包括疾病发作期间的就诊机会和镇痛药的不良反应。从风湿病调查中可以看出，axSpA 的概念和术语得到了受访者的广泛认可（88%）。大多数中心至少有一名对 axSpA 有专业兴趣的风湿病医生（62%）、专门的 axSpA 诊所（58%）或 axSpA 多学科团队（64%）。BASDAI（99%）、BASFI（74%）和 BASMI（65%）常规进行。所有中心都可以进行 MRI 扫描，但扫描方案各不相同，而且往往不够理想。
尽管对风湿病护理的总体满意度较高，但结果表明存在显著的未满足的患者需求和服务提供方面的差异。这些信息将为 axSpA 质量标准的制定提供依据，以提高质量并为所有患者提供公平的护理。
