Ichikawa Takanori, Kishida Dai, Shimojima Yasuhiro, Yajima Nobuyuki, Oguro Nao, Yoshimi Ryusuke, Sakurai Natsuki, Hidekawa Chiharu, Sada Ken-Ei, Miyawaki Yoshia, Hayashi Keigo, Shidahara Kenta, Ishikawa Yuichi, Sekijima Yoshiki, Kurita Noriaki
T. Ichikawa, MD, PhD, Department of Medicine (Neurology and Rheumatology), Shinshu University School of Medicine, Matsumoto, Nagano, and Department of Clinical Epidemiology, Graduate School of Medicine, Fukushima Medical University, Fukushima, Fukushima.
D. Kishida, MD, PhD, Department of Medicine (Neurology and Rheumatology), Shinshu University School of Medicine, Matsumoto, Nagano.
J Rheumatol. 2025 Apr 15. doi: 10.3899/jrheum.2024-1088.
The growing use of social networking services (SNS) has affected how patients with systemic lupus erythematosus (SLE) access health information, potentially influencing their interaction with healthcare providers. This study aimed to examine patients' preferences, actual use, and trust in various health information sources, along with the factors influencing the trust among patients with SLE.
A multicenter, cross-sectional survey was conducted from June 2020 to August 2021, involving 510 Japanese adults with SLE. Participants reported their preferred and actual sources of health information, including SNS, and their level of trust in these sources. Modified Poisson regression was used to analyze factors influencing trust, including internet usage and health literacy (HL; functional, communicative, and critical).
Most respondents (98.2%) expressed trust in doctors, whereas trust in websites and blogs (52%) and SNS (26.8%) was lower. Despite this, the internet was the most frequent initial source of health information (45.3%), encompassing medical institution websites, patient blogs, X (formerly known as Twitter), and Instagram. Longer internet usage periods were associated with a greater trust in websites and blogs and SNS. Higher functional HL was correlated with an increased trust in doctors but decreased trust in homepages/blogs and SNSs. Higher communicative HL was linked to a greater trust in doctors, websites, and blogs.
Although many patients with SLE initially seek health information online, they prefer to consult rheumatologists. Internet usage duration and multidimensional HL influence trust in online sources. Healthcare providers should consider these factors when disseminating health information and engaging with patients.
社交网络服务（SNS）的使用日益增加，影响了系统性红斑狼疮（SLE）患者获取健康信息的方式，可能会影响他们与医疗服务提供者的互动。本研究旨在调查患者对各种健康信息来源的偏好、实际使用情况和信任度，以及影响SLE患者信任度的因素。
于2020年6月至2021年8月进行了一项多中心横断面调查，纳入510名日本成年SLE患者。参与者报告了他们首选的和实际使用的健康信息来源，包括SNS，以及他们对这些来源的信任程度。采用修正泊松回归分析影响信任的因素，包括互联网使用情况和健康素养（HL；功能素养、沟通素养和批判性素养）。
大多数受访者（98.2%）表示信任医生，而对网站和博客（52%）以及SNS（26.8%）的信任度较低。尽管如此，互联网仍是最常见的健康信息初始来源（45.3%），包括医疗机构网站、患者博客、X（原推特）和照片墙。互联网使用时间越长，对网站、博客和SNS的信任度越高。较高的功能素养与对医生的信任增加相关，但对主页/博客和SNS的信任降低。较高的沟通素养与对医生、网站和博客的信任增加有关。
尽管许多SLE患者最初会在网上寻求健康信息，但他们更愿意咨询风湿病专家。互联网使用时长和多维度健康素养会影响对在线信息来源的信任。医疗服务提供者在传播健康信息和与患者互动时应考虑这些因素。
