School of Medicine, Keele University, Keele, UK.
Academic Unit of Population and Lifespan Sciences, University of Nottingham, Nottingham, UK.
Rheumatol Int. 2024 May;44(5):863-884. doi: 10.1007/s00296-024-05554-z. Epub 2024 Mar 12.
Diagnosis of axial spondyloarthritis (axSpA) is frequently delayed for years after symptom onset. However, little is known about patient and healthcare professional (HCP) perspectives on barriers and facilitators in axSpA diagnosis. This study explored the experiences and perceptions of both groups regarding the factors affecting the timely diagnosis of axSpA.
Semi-structured interviews with patients with axSpA and axSpA-interested HCPs from the United Kingdom (UK) were performed by telephone or Microsoft Teams and focussed on the individuals' perspective of the diagnostic journey for axSpA. Interview transcripts were thematically analysed.
Fourteen patients with axSpA (10 female, 4 male) and 14 UK based HCPs were recruited, the latter comprising of 5 physiotherapists, 4 General Practitioners, 3 rheumatologists, a nurse, and an occupational therapist. Barriers to diagnosis identified by patients and HCPs were: difficult to diagnose, a lack of awareness, unclear referral pathways, patient behaviour and patient/HCP communication. Patient-identified facilitators of diagnosis were patient advocacy, clear referral processes and pathways, increased awareness, and serendipity. HCPs identified promoting awareness as a facilitator of diagnosis, along with symptom recognition, improvements to healthcare practice and patient/HCP communications.
Poor communication and a lack of understanding of axSpA in the professional and public spheres undermine progress towards timely diagnosis of axSpA. Improving communication and awareness for patients and HCPs, along with systemic changes in healthcare (such as improved referral pathways) could reduce diagnostic delay.
轴性脊柱关节炎(axSpA)的诊断通常在症状出现后多年才被确诊。然而,人们对患者和医疗保健专业人员(HCP)对 axSpA 诊断中障碍和促进因素的看法知之甚少。本研究探讨了两组人员对影响 axSpA 及时诊断的因素的经验和看法。
通过电话或 Microsoft Teams 对来自英国(UK)的 axSpA 患者和 axSpA 相关 HCP 进行半结构化访谈,重点关注个人对 axSpA 诊断过程的看法。对访谈记录进行主题分析。
共招募了 14 名 axSpA 患者(10 名女性,4 名男性)和 14 名英国 HCP,后者包括 5 名物理治疗师、4 名全科医生、3 名风湿病专家、1 名护士和 1 名职业治疗师。患者和 HCP 确定的诊断障碍包括:难以诊断、缺乏意识、转诊途径不明确、患者行为和医患沟通。患者认为有助于诊断的因素有:患者倡导、明确的转诊流程和途径、提高认识和机缘巧合。HCP 认为提高认识是诊断的促进因素,同时还有症状识别、改善医疗实践和医患沟通。
专业和公众领域中对 axSpA 的沟通不畅和缺乏了解,阻碍了 axSpA 的及时诊断。改善医患沟通和意识,以及医疗保健系统的系统性改变(如改善转诊途径),可以减少诊断延误。