JMIR Publications

ABSTRACT

Background:

Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders caused by fragile lax collagen. Current EDS research lacks racial and ethnic diversity. The lack of diversity may be associated with the complexities of conducting a large international study on an underdiagnosed condition and a lack of EDS healthcare providers who diagnose and conduct research outside of the US and Europe. Social media may be the key to recruiting large diverse EDS sample. However, studies that have used social media to recruit have not been able to recruit diverse samples.

Objective:

This study aims to discuss challenges, strategies, outcomes, and lessons learned from using social media to recruit a large sample of females with EDS.

Methods:

Recruitment on social medial for a cross-sectional survey examining dyspareunia (painful sexual intercourse) in females was examined. Inclusion criteria were: 1) over 18 years old, 2) assigned female at birth, and 3) diagnosed with EDS. Recruitment took place on Facebook and Twitter, now X, from June 1st to June 25th, 2019.

Results:

1178 females with EDS were recruited with 1,174 from Facebook and 4 from X. On Facebook participants were recruited via support groups. 166 EDS support groups were identified, 104 permitted the principal investigator to join, 90 approved posting, and the survey was posted in 54 groups. 30 of the support groups posted were globally focused and not tied to any specific country or region; 21 were for people in the United States (US), and 3 were for people outside of the US. Recruitment materials were posted on X with the hashtag #EDS. 1,599 people accessed the survey and 1,178 people were eligible and consented. The average age of participants was 38.6 + 11.7 years. Participants were predominantly White (92.8%) and non-Hispanic (91.9%). Participants were recruited from 29 countries, with 78.5% from the US and 10.8% from Great Britain.

Conclusions:

Our recruitment method was successful at quickly recruiting a large sample. The sample was predominantly White and from North America and Europe. More research needs to be conducted on how to recruit a diverse sample. Areas to investigate may include connecting with more support groups from outside of the US and Europe, researching which platforms are popular in different countries, and translating study materials into different languages. A larger obstacle to recruiting diverse samples may be the lack of healthcare providers that diagnose EDS outside of the US and Europe, making the pool of potential participants small. There needs to be more healthcare providers that diagnose and treat EDS in countries that predominantly are populated by people of color along with research that targets these populations.