Online Education Improves Adherence in Young Patients With Lupus


For better or worse, social media and the Internet have a large role in the lives of young people-and as such are an effective way to reach them.

Key points
• It is feasible to create educational online content that may help young people manage their lupus.

• Online lupus education improved hydroxychloroquine adherence in adolescents and young adults.

• The addition of social media support further increased adherence in this population.

Difficulties that adult patients have in coping with and managing systemic lupus erythematosus (SLE) are compounded in young adults and adolescents, who are less prepared for the burden. Self-management is crucial to medication adherence, which in turn is crucial to disease control in lupus.

Scalzi and colleagues at Pennsylvania State University in Hershey point out that where SLE education is concerned, little is known about how to target adolescents, an age group with a complex set of emotional and developmental needs.1

Widespread use of social media and technology in general by young adults and adolescents may represent an effective means of empowering those with SLE to take self-management seriously-in addition to providing them with a resource to learn about their disease.

The authors examined the feasibility of recruitment for a trial that looked at the effect of participation in an online educational website for adolescents and young adults with SLE. They compared participation levels in subjects with and without social media inclusion. Recently, they presented their findings in Pediatric Rheumatology.

The study
The authors created a publicly available website (, which contains educational content about lupus. Twenty-seven subjects with SLE between the ages of 13 and 23 years completed the study. The subjects visited the website and completed educational modules.

Feasibility outcomes included recruitment, compliance, and dropout proportions. The secondary outcome was adherence to prescribed hydroxychloroquine.

The results
• 26% of the controls and 28% of the social media subjects were lost to follow-up because they did not complete all of the online questionnaires at T0 and/or T1.

• No statistical difference was found between the control and social media groups with regard to dropout (P = .8).

• 86% of subjects completed the first set of surveys, and 73% completed both sets.

• The percentage of all subjects “adherent” to prescribed hydroxychloroquine (those with a medication possession ratio of ≥ 0.8, or 80%) improved from 54% to 79% (P = .07).

• Sense of agency and sense of community improved significantly in subjects in the social media group.

Please click below for Implications for Clinicians.

Implications for clinicians
• Make use of every tool you can to reach patients with SLE-particularly young people, who have not yet developed good self-management skills.

• For better or worse, social media and the Internet are a large part of young people’s lives and as such are a way to reach them.

• Following your young SLE patients through social media and supplying them with an online community where they can receive knowledge and support may improve treatment adherence and ultimately quality of life.


The Lupus Foundation of America and the Children’s Miracle Network provided funding for the project.


1. Scalzi LV, Hollenbeak CS, Mascuilli E, Olsen N. Improvement of medication adherence in adolescents and young adults with SLE using web-based education with and without a social media intervention, a pilot study. Pediatr Rheumatol. 2018;16:18. doi: 10.1186/s12969-018-0232-2.

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