van der Kraan Yvonne M, Paap Davy, Lennips Niels, Veenstra Else C A, Wink Freke R, Kieskamp Stan C, Spoorenberg Anneke
Department of Rheumatology and Clinical Immunology, University Medical Center Groningen, University of Groningen, PO Box 30 001, 9700 RB, Groningen, The Netherlands.
Department of Physiotherapy, School of Health, Saxion University of Applied Sciences, 7513 AB, Enschede, The Netherlands.
Rheumatol Ther. 2023 Oct;10(5):1349-1368. doi: 10.1007/s40744-023-00585-7. Epub 2023 Jul 31.
Within the EULAR recommendations, patient education (PE) is stated as the basis of the management of axial spondyloarthritis (axSpA). However, educational needs are scarcely qualitatively studied in axSpA. Therefore, we aimed to explore experiences and needs of PE in patients with axSpA.
A phenomenological approach was used, with semi-structured in-depth interviews with patients with axSpA including broad variation in characteristics. Thematic analysis was applied. To enhance credibility, data saturation, research triangulation, peer debriefing, member checking, theoretical notes, and bracketing were performed.
Three interrelated themes regarding PE were identified from 20 interviews: illness perception, content, and 'availability'. Illness perception affects how patients experience and process PE, which consequently influences coping strategies. Prognosis, treatment, and coaching to self-management were identified as the most important content of PE. Regarding 'availability', face-to-face PE is preferred for exploring needs, supplemented by self-education, which can be freely applied. Additionally, sufficient time and a comprehensible amount of information were important and participants emphasized the need for axSpA-tailored information for relatives and friends. Participants reported a trusting patient-healthcare provider (HCP) relationship, and multidisciplinary and interdisciplinary attunement between HCPs as prerequisites for effective PE.
This first qualitative study exploring patients' experiences and needs of PE in axSpA revealed that prognosis, treatment, and coaching to self-management are important regarding content, and the combination of face-to-face contact and self-education the preferred modalities. It seems essential that patients' illness perceptions are taken into account for effective PE. These results add relevant insights for future PE guidelines in axSpA.
在欧洲抗风湿病联盟（EULAR）的建议中，患者教育（PE）被视为轴性脊柱关节炎（axSpA）管理的基础。然而，在axSpA中，对教育需求的定性研究却很少。因此，我们旨在探讨axSpA患者对患者教育的体验和需求。
采用现象学方法，对axSpA患者进行半结构化深度访谈，患者特征具有广泛差异。应用主题分析。为提高可信度，进行了数据饱和、研究三角互证、同行汇报、成员核对、理论笔记和悬置法。
通过对20名患者的访谈，确定了与患者教育相关的三个相互关联的主题：疾病认知、内容和“可及性”。疾病认知影响患者体验和接受患者教育的方式，进而影响应对策略。预后、治疗和自我管理指导被确定为患者教育的最重要内容。关于“可及性”，探索需求时首选面对面的患者教育，并辅以可自由应用的自我教育。此外，充足的时间和适量易懂的信息很重要，参与者强调需要为亲属和朋友提供针对axSpA的定制信息。参与者报告称，信任的患者与医疗保健提供者（HCP）关系以及HCP之间的多学科和跨学科协调是有效进行患者教育的前提条件。
这项首次探索axSpA患者对患者教育的体验和需求的定性研究表明，就内容而言，预后、治疗和自我管理指导很重要，面对面接触和自我教育相结合是首选方式。考虑患者的疾病认知对于有效的患者教育似乎至关重要。这些结果为未来axSpA的患者教育指南提供了相关见解。
