School of Health and Social Wellbeing, University of the West of England, Bristol, UK.
School of Healthcare Sciences, Cardiff University, Cardiff, UK.
RMD Open. 2022 Apr;8(1). doi: 10.1136/rmdopen-2022-002256.
To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA).
This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories.
The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE.
The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.
探索患者对欧洲抗风湿病联盟（EULAR）炎症性关节炎（IA）患者教育（PE）建议的认同程度及其认同或不认同的原因。
本混合方法调查采用滚雪球抽样收集数据。该调查已由当地医疗保健专业人员、研究人员和患者研究伙伴翻译成 20 种语言。它探讨了 IA 患者对每个 PE 建议的认同程度（0=完全不同意，10=完全同意）以及他们在自由文本问题中对其认同水平的基本原理。描述性统计数据总结了参与者的人口统计学特征和认同水平。定性内容分析用于分析自由文本数据。制定了 16 个子类别，描述了对建议的认同或不认同的原因，这些子类别构成了类别。
样本包括 2779 名参与者（79%为女性），平均（SD）年龄为 55.1（13.1）岁，疾病持续时间为 17.1（13.3）年。参与者强烈认同大多数建议（大多数建议的中位数为 10（IQR：9-10））。对建议的认同原因包括使用 PE 促进协作式护理和共同决策、PE 具有灵活性和针对性的价值以及从其他患者那里获得支持的价值。不认同的原因包括缺乏 PE 资源、不希望由医疗保健专业人员定制信息以及不愿意使用基于电话的 PE。
EULAR 的 PE 建议已在 IA 患者中传播。总体而言，认同水平非常高，这表明它们反映了患者对参与协作式临床护理以及使用 PE 来促进和补充自己对 IA 的理解的偏好。不完全认同建议的原因可以为实施策略和医疗保健专业人员的教育提供信息。
