BACKGROUND: Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are genetically mediated, life-threatening reactions usually caused by a medication in adults. These genetic associations promise an opportunity for pre-prescription screening, prevention, and understanding influences at a population level. Importantly, older adults disproportionally face more severe SJS/TEN reactions and higher mortality rates. However, the study of genetic risk and long-term sequelae of SJS/TEN across racially diverse populations and age groups is hampered by many factors, including rarity, social disparities, and trust in health care and providers, impacting access to hospital- and clinic-based research studies.
OBJECTIVE: This paper aims to explore the utility of multiple social media and web-based search tools to increase study enrollment numbers, diversity, and inclusivity of all populations and ages in the SJS Survivor Study.
METHODS: The community-based SJS/TEN Survivor Study remotely recruited drug-induced SJS/TEN survivors in the United States. The aims were to help determine genetic risk and long-term outcomes of SJS/TEN. Baseline recruitment included advertisements through the SJS Foundation website and American Burn Association newsletter. Two years into the study, in hopes of improving accessibility and enrollment diversity, social media ads were introduced on the Vanderbilt University Medical Center (VUMC) Facebook and Instagram accounts. Posts were created using flyers and 60-second SJS/TEN survivor video vignettes. Finally, we launched a nationwide Google Ad campaign. To understand the impact of the additional online advertising, we measured the change in registration in both the study interest and the effectiveness of implementation of specific social media and web-based search tools before and after implementation.
RESULTS: With the introduction of social media and Google Ads, we report a 48.6% increase in enrollment overall and a 289.5% increase in participation interest. We noticed the ads were accessible to all age groups and notably reported a more even age distribution of enrolled participants from 18 through 74 years, with an average of 15% enrolled in each age category. The largest increase in any age category was seen in the 65- to 74-year-old patients (n=19), with 16.5% of the age distribution. The most significant increase in enrollment and diversity of responses came from Google Ads, with a total of 201 expressions of interest, from 56 enrolled participants, 33% of which self-identified as non-White. VUMC Facebook ads had an enrollment rate of 15.3%, and VUMC Instagram ads saw an enrollment rate of 14.3%.
CONCLUSIONS: Social media and web-based search tools differ in their enrollment effectiveness. Google Ads were found to be the most effective advertisement for recruitment in this community-based study. Each of the social media and web-based strategies used increased enrollment numbers, accessibility to more age ranges, and diversity of enrollment. They show promise as tools to improve inclusion and enrollment in rare disease research such as SJS/TEN.
