Systemic lupus erythematosus on social networking sites: Friends or foes?

Abstract

Systemic lupus erythematosus (SLE) is one of the most studied autoimmune diseases. The interest shown for this pathology is translated into international scientific journals, congresses, meetings and, recently, in large data available online. Social networking sites (SNS) have gradually advanced from ways to facilitate interpersonal relations to important sources of information, including medical data regarding SLE, with sites largely accessed by both doctors and patients. Albeit the use of SNS can be valuable in providing education and promoting development of public health, it can be misleading if unprofessional sources of information are used; therefore, both “friends and foes” of the data accessed on large scale should always be considered. This viewpoint is a discussion of the potential benefits and harms related to the SNS use for SLE patients as well as for their physicians.

Social support and audience engagement of lupus-related posts on social networking sites in China

“…However, it is worth noting that the increasing accessibility of widespread digital information exerts not only a positive role in enriching the knowledge of users living with lupus and raising their awareness but also a negative one that the patient trust in medical professions and treatment adherence might be decreased [ 5 , 15 , 31 ]. Additionally, these findings must be interpreted with caution because the current study was not specifically designed to evaluate whether the thematic categories of lupus-related posts provided are consistent with the main themes of user requirements.…”

“…Noticeably, another important finding was that the instrumental and emotional support provisions were not matched by the requests. Above all, this result highlights that the primary motivation of chronic patients for accessing social networking sites is expressing their sentiments and looking for encouragement or understanding [ 15 , 33 ]. And the explanation for these unmet needs can be summarized by the following two points: a) high demands of lupus patients and b) low supply from the physicians and social referents.…”

“…Similarly, as lupus commonly affects child-bearing females who are avid internet users as well, online social networking created an interactive and anonymous space where they can freely discuss social and daily life with others having similar health concerns, such as working capacity and pregnancy management [ 13 ]. Considering together, given the infrequency and chronicity of lupus, online social networking sites are rapidly becoming the most promising information sources for strengthening lupus-related health education and empowering patients and their referents by continuously offering social support [ 14 , 15 ].…”

Crying Wolf: A Qualitative Review of Misinformation and Conspiracy Theories in Lupus Erythematosus

“…1 Social media and internet-based resources are widely used by patients with lupus to access information and support, which can result in rapid proliferation of misinformation. 2,3 Misleading or conflicting messaging has potential for harm to patients by weakening trust in medical providers, increasing anxiety and fear (particularly in those newly diagnosed or with mild disease), and influencing delay or discontinuation of treatment. The global proliferation of health misinformation, defined as health-related claims that are not consistent with scientific consensus and are not biologically plausible, has been referred to by the World Health Organization as the "Infodemic" (https://www.who.int/health-topics/infodemic#tab=tab_1).…”