Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based Survey
Abstract BackgroundStevens-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, a...
Saved in:
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
JMIR Publications
2025-05-01
|
| Series: | Journal of Medical Internet Research |
| Online Access: | https://jmir.jmir.org/2025/1/e63712 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1849321533221109760 |
|---|---|
| author | Elizabeth A Williams Michelle D Martin-Pozo Alexis H Yu Krystyna Daniels Madeline Marks April O'Connor Elizabeth J Phillips |
| author_facet | Elizabeth A Williams Michelle D Martin-Pozo Alexis H Yu Krystyna Daniels Madeline Marks April O'Connor Elizabeth J Phillips |
| author_sort | Elizabeth A Williams |
| collection | DOAJ |
| description |
Abstract
BackgroundStevens-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.
ObjectiveThis 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.
MethodsThe 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.
ResultsWith 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%.
ConclusionSocial 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. |
| format | Article |
| id | doaj-art-e3468ad56e90470e8abbb57946af1359 |
| institution | Kabale University |
| issn | 1438-8871 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | Journal of Medical Internet Research |
| spelling | doaj-art-e3468ad56e90470e8abbb57946af13592025-08-20T03:49:44ZengJMIR PublicationsJournal of Medical Internet Research1438-88712025-05-0127e63712e6371210.2196/63712Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based SurveyElizabeth A Williamshttp://orcid.org/0009-0000-3648-4033Michelle D Martin-Pozohttp://orcid.org/0000-0002-1526-9569Alexis H Yuhttp://orcid.org/0009-0003-0775-493XKrystyna Danielshttp://orcid.org/0009-0006-4400-7118Madeline Markshttp://orcid.org/0009-0000-0923-4872April O'Connorhttp://orcid.org/0009-0005-8830-8898Elizabeth J Phillipshttp://orcid.org/0000-0002-7623-3383 Abstract BackgroundStevens-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. ObjectiveThis 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. MethodsThe 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. ResultsWith 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%. ConclusionSocial 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.https://jmir.jmir.org/2025/1/e63712 |
| spellingShingle | Elizabeth A Williams Michelle D Martin-Pozo Alexis H Yu Krystyna Daniels Madeline Marks April O'Connor Elizabeth J Phillips Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based Survey Journal of Medical Internet Research |
| title | Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based Survey |
| title_full | Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based Survey |
| title_fullStr | Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based Survey |
| title_full_unstemmed | Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based Survey |
| title_short | Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based Survey |
| title_sort | improving recruitment through social media and web based advertising to evaluate the genetic risk and long term complications in stevens johnson syndrome and toxic epidermal necrolysis community based survey |
| url | https://jmir.jmir.org/2025/1/e63712 |
| work_keys_str_mv | AT elizabethawilliams improvingrecruitmentthroughsocialmediaandwebbasedadvertisingtoevaluatethegeneticriskandlongtermcomplicationsinstevensjohnsonsyndromeandtoxicepidermalnecrolysiscommunitybasedsurvey AT michelledmartinpozo improvingrecruitmentthroughsocialmediaandwebbasedadvertisingtoevaluatethegeneticriskandlongtermcomplicationsinstevensjohnsonsyndromeandtoxicepidermalnecrolysiscommunitybasedsurvey AT alexishyu improvingrecruitmentthroughsocialmediaandwebbasedadvertisingtoevaluatethegeneticriskandlongtermcomplicationsinstevensjohnsonsyndromeandtoxicepidermalnecrolysiscommunitybasedsurvey AT krystynadaniels improvingrecruitmentthroughsocialmediaandwebbasedadvertisingtoevaluatethegeneticriskandlongtermcomplicationsinstevensjohnsonsyndromeandtoxicepidermalnecrolysiscommunitybasedsurvey AT madelinemarks improvingrecruitmentthroughsocialmediaandwebbasedadvertisingtoevaluatethegeneticriskandlongtermcomplicationsinstevensjohnsonsyndromeandtoxicepidermalnecrolysiscommunitybasedsurvey AT apriloconnor improvingrecruitmentthroughsocialmediaandwebbasedadvertisingtoevaluatethegeneticriskandlongtermcomplicationsinstevensjohnsonsyndromeandtoxicepidermalnecrolysiscommunitybasedsurvey AT elizabethjphillips improvingrecruitmentthroughsocialmediaandwebbasedadvertisingtoevaluatethegeneticriskandlongtermcomplicationsinstevensjohnsonsyndromeandtoxicepidermalnecrolysiscommunitybasedsurvey |