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数字患者教育在风湿病管理中的潜力与障碍:一项探索性定性访谈研究

Potentials and barriers of digital patient education in rheumatic disease management: an exploratory qualitative interview study.

作者信息

Lumma Franziska, Knitza Johannes, Mühlensiepen Felix

机构信息

Medicstream, Hürth, Germany.

Institute for Digital Medicine, University Hospital Giessen-Marburg, Philipps University, Marburg, Germany.

出版信息

Rheumatol Int. 2025 Jun 4;45(6):148. doi: 10.1007/s00296-025-05893-5.

Abstract

Patient education (PE) is essential, however hindered by the limited time of rheumatology healthcare professionals. Digital patient education (DPE) promises to bridge this care gap. This study explores the potential and challenges of DPE in rheumatology. Semi-structured expert interviews were conducted with 14 stakeholders across healthcare levels, including rheumatologists, specialized nurses, patient representatives, policymakers, and industry experts. Data were analyzed using qualitative content analysis following Kuckartz's methodology, with intracoder reliability assessed via the Brennan-Prediger Kappa coefficient. Three main themes emerged in the qualitative content analysis: (1) the status quo of PE in general, (2) the potentials and challenges of DPE and (3) DiRhIS as an emerging tool in the field of DPE in rheumatology. Participants highlighted significant gaps in traditional PE, including limited consultation time, inadequate access to information, and misinformation risks. While DPE was recognized as a promising tool to enhance patient knowledge, adherence, and shared decision-making, systemic barriers hinder adoption. Experts identified key obstacles such as resistance among healthcare providers, limited digital literacy among patients, and challenges in integrating DPE into clinical workflows. A hybrid model combining digital and in-person education was favored to address patient needs across different literacy levels. Successful implementation requires structured integration, stakeholder involvement, and strategies to address infrastructural and attitudinal barriers. Digital patient education (DPE) has the potential to enhance accessibility and the quality of patient education in rheumatology. Findings emphasize the need for personalized patient education, where the balance between face-to-face and digital learning is adapted to individual preferences, health literacy levels, and accessibility needs.

摘要

患者教育(PE)至关重要,但受到风湿病医疗专业人员有限时间的阻碍。数字患者教育(DPE)有望弥合这一护理差距。本研究探讨了DPE在风湿病学中的潜力和挑战。对包括风湿病学家、专科护士、患者代表、政策制定者和行业专家在内的14名不同医疗层面的利益相关者进行了半结构化专家访谈。采用Kuckartz方法进行定性内容分析,并通过布伦南-普雷迪格卡帕系数评估编码员内部信度。定性内容分析中出现了三个主要主题:(1)一般患者教育的现状,(2)DPE的潜力和挑战,以及(3)DiRhIS作为风湿病学DPE领域的一种新兴工具。参与者强调了传统患者教育中的重大差距,包括咨询时间有限、信息获取不足和错误信息风险。虽然DPE被认为是提高患者知识、依从性和共同决策的有前途的工具,但系统性障碍阻碍了其采用。专家们确定了关键障碍,如医疗服务提供者的抵触、患者数字素养有限以及将DPE整合到临床工作流程中的挑战。一种结合数字教育和面对面教育的混合模式受到青睐,以满足不同文化程度患者的需求。成功实施需要结构化整合、利益相关者参与以及解决基础设施和态度障碍的策略。数字患者教育(DPE)有潜力提高风湿病学患者教育的可及性和质量。研究结果强调了个性化患者教育的必要性,即面对面学习和数字学习之间的平衡要根据个人偏好、健康素养水平和可及性需求进行调整。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a16a/12137533/44cf95c86be6/296_2025_5893_Fig1_HTML.jpg

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