Jung Seung Min, Park Sung-Hoon, Lee Jisoo, Park Yune-Jung, Shim Seung Cheol
Division of Rheumatology, Department of Internal Medicine, St. Vincent's Hospital, College of Medicine, The Catholic University of Korea, Seoul, Republic of Korea.
Division of Rheumatology, Department of Internal Medicine, School of Medicine, Daegu Catholic University, Daegu, Republic of Korea.
Lupus. 2025 Jan;34(1):39-46. doi: 10.1177/09612033241301172. Epub 2024 Nov 18.
With the increasing prevalence of digital devices and internet access, digital resources have become essential for educating patients with chronic diseases. We explored the patient perspective on health-related internet searches among Korean patients with systemic lupus erythematosus (SLE).
We collected data through a Google Survey from 344 SLE patients. The survey covered demographics, preferred digital devices and sources, and digital information content, and participants' views on digital resources. We analyzed patient characteristics associated with digital resource usage.
Of the 344 patients, 270 reported using the internet to acquire disease-related information, including the association between nutrition and SLE, general information on SLE, and coping strategies for SLE management. SLE-related searches on the internet were more common in patients younger than 40 years ( = 0.002), those with fewer than 15 years of disease duration ( < 0.001), and those with higher education levels ( = 0.022). Disease duration was independently associated with internet use. Patients reported that internet searches for information on SLE improved their understanding of the disease in 181 cases and motivated self-management in 166 cases. In addition, 98 patients found it helpful to make a shared decision with physicians.
Health-related searches on the internet are widely used by SLE patients to gather comprehensive information on the disease and to address unmet needs. The positive impact of SLE-related internet searches on disease understanding and self-management emphasizes the importance of developing high-quality digital resources to improve patient education and self-care for the disease.
随着数字设备的普及和互联网接入的增加，数字资源已成为慢性病患者教育的重要组成部分。我们探讨了韩国系统性红斑狼疮（SLE）患者对与健康相关的互联网搜索的看法。
我们通过谷歌调查收集了344名SLE患者的数据。该调查涵盖了人口统计学、首选数字设备和信息来源、数字信息内容以及参与者对数字资源的看法。我们分析了与数字资源使用相关的患者特征。
在344名患者中，270名报告使用互联网获取与疾病相关的信息，包括营养与SLE的关联、SLE的一般信息以及SLE管理的应对策略。在40岁以下的患者（P = 0.002）、病程少于15年的患者（P < 0.001）以及教育水平较高的患者（P = 0.022）中，互联网上与SLE相关的搜索更为常见。病程长短与互联网使用独立相关。患者报告称，在181例中，通过互联网搜索SLE信息提高了他们对疾病的理解；在166例中，激发了自我管理的积极性。此外，98名患者发现与医生共同做出决策很有帮助。
SLE患者广泛使用与健康相关的互联网搜索来收集有关该疾病的全面信息并满足未满足的需求。与SLE相关的互联网搜索对疾病理解和自我管理的积极影响强调了开发高质量数字资源以改善患者教育和该疾病自我护理的重要性。
