PDF(Pubmed)
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 health care providers who diagnose and conduct research outside of the United States and Europe. Social media may be the key to recruiting a 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 media for a cross-sectional survey examining dyspareunia (painful sexual intercourse) in females was examined. Inclusion criteria were (1) older than 18 years of age, (2) assigned female at birth, and (3) diagnosed with EDS. Recruitment took place on Facebook and Twitter (now X), from June 1 to June 25, 2019.
RESULTS: A total of 1178 females with EDS were recruited from Facebook (n=1174) and X (n=4). On Facebook, participants were recruited via support groups. A total of 166 EDS support groups were identified, 104 permitted the principal investigator to join, 90 approved posting, and the survey was posted in 54 groups. Among them, 30 of the support groups posted in were globally focused and not tied to any specific country or region, 21 were for people in the United States, and 3 were for people outside of the United States. Recruitment materials were posted on X with the hashtag #EDS. A total of 1599 people accessed the survey and 1178 people were eligible and consented. The average age of participants was 38.6 (SD 11.7) years. Participants were predominantly White (n=1063, 93%) and non-Hispanic (n=1046, 92%). Participants were recruited from 29 countries, with 900 (79%) from the United States and 124 (11%) from Great Britain.
CONCLUSIONS: Our recruitment method was successful at 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 the United States 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 health care providers that diagnose EDS outside the United States and Europe, making the pool of potential participants small. There needs to be more health care providers that diagnose and treat EDS in countries that are predominantly made up of people of color as well as research that specifically focuses on these populations.
UNASSIGNED: RR1-10.2196/53646.
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 media for a cross-sectional survey examining dyspareunia (painful sexual intercourse) in females was examined. Inclusion criteria were (1) older than 18 years of age, (2) assigned female at birth, and (3) diagnosed with EDS. Recruitment took place on Facebook and Twitter (now X), from June 1 to June 25, 2019.
RESULTS: A total of 1178 females with EDS were recruited from Facebook (n=1174) and X (n=4). On Facebook, participants were recruited via support groups. A total of 166 EDS support groups were identified, 104 permitted the principal investigator to join, 90 approved posting, and the survey was posted in 54 groups. Among them, 30 of the support groups posted in were globally focused and not tied to any specific country or region, 21 were for people in the United States, and 3 were for people outside of the United States. Recruitment materials were posted on X with the hashtag #EDS. A total of 1599 people accessed the survey and 1178 people were eligible and consented. The average age of participants was 38.6 (SD 11.7) years. Participants were predominantly White (n=1063, 93%) and non-Hispanic (n=1046, 92%). Participants were recruited from 29 countries, with 900 (79%) from the United States and 124 (11%) from Great Britain.
CONCLUSIONS: Our recruitment method was successful at 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 the United States 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 health care providers that diagnose EDS outside the United States and Europe, making the pool of potential participants small. There needs to be more health care providers that diagnose and treat EDS in countries that are predominantly made up of people of color as well as research that specifically focuses on these populations.
UNASSIGNED: RR1-10.2196/53646.
摘要：
背景：Ehlers-Danlos综合征（EDS）是一组由脆性松懈胶原引起的结缔组织疾病。目前的EDS研究缺乏种族和民族多样性。缺乏多样性可能与对未诊断状况进行大型国际研究的复杂性以及缺乏在美国和欧洲以外进行诊断和研究的EDS医疗保健提供者有关。社交媒体可能是招募大量多样化EDS样本的关键。然而,使用社交媒体招募的研究未能招募到不同的样本。
目的：本研究旨在讨论挑战，战略,结果，以及从使用社交媒体招募大量EDS女性样本中吸取的教训。
方法：在社交媒体上招募一项横断面调查，检查女性性交困难（痛苦性交）。纳入标准为（1）年龄超过18岁，（2）出生时指定的女性，(3)诊断为EDS。招聘发生在Facebook和Twitter（现在是X），从2019年6月1日至6月25日。
结果：从Facebook（n=1174）和X（n=4）招募了1178名患有EDS的女性。在Facebook上,参与者是通过支持小组招募的.总共确定了166个EDS支持小组，104允许首席调查员加入，90批准张贴，调查在54个小组中发布。其中,派驻的30个支持小组以全球为重点，不与任何特定国家或地区联系在一起，21是为美国人准备的，3是为美国以外的人准备的。招聘材料张贴在X上，标签为#EDS。共有1599人参加了调查，1178人获得了资格和同意。参与者的平均年龄为38.6（SD11.7）岁。参与者主要是白人（n=1063，93％）和非西班牙裔（n=1046，92％）。参与者来自29个国家，900人(79%)来自美国，124人(11%)来自英国。
结论：我们的招募方法在招募大样本方面是成功的。样品主要是来自北美和欧洲的白色。需要对如何招募多样化的样本进行更多的研究。要调查的领域可能包括与来自美国和欧洲以外的更多支持团体联系，研究哪些平台在不同国家流行，并将学习材料翻译成不同的语言。招募不同样本的更大障碍可能是缺乏在美国和欧洲以外诊断EDS的医疗保健提供者，使潜在参与者的数量减少。需要有更多的医疗保健提供者来诊断和治疗主要由有色人种组成的国家的EDS，以及专门针对这些人群的研究。
■RR1-10.2196/53646。
目的：本研究旨在讨论挑战，战略,结果，以及从使用社交媒体招募大量EDS女性样本中吸取的教训。
方法：在社交媒体上招募一项横断面调查，检查女性性交困难（痛苦性交）。纳入标准为（1）年龄超过18岁，（2）出生时指定的女性，(3)诊断为EDS。招聘发生在Facebook和Twitter（现在是X），从2019年6月1日至6月25日。
结果：从Facebook（n=1174）和X（n=4）招募了1178名患有EDS的女性。在Facebook上,参与者是通过支持小组招募的.总共确定了166个EDS支持小组，104允许首席调查员加入，90批准张贴，调查在54个小组中发布。其中,派驻的30个支持小组以全球为重点，不与任何特定国家或地区联系在一起，21是为美国人准备的，3是为美国以外的人准备的。招聘材料张贴在X上，标签为#EDS。共有1599人参加了调查，1178人获得了资格和同意。参与者的平均年龄为38.6（SD11.7）岁。参与者主要是白人（n=1063，93％）和非西班牙裔（n=1046，92％）。参与者来自29个国家，900人(79%)来自美国，124人(11%)来自英国。
结论：我们的招募方法在招募大样本方面是成功的。样品主要是来自北美和欧洲的白色。需要对如何招募多样化的样本进行更多的研究。要调查的领域可能包括与来自美国和欧洲以外的更多支持团体联系，研究哪些平台在不同国家流行，并将学习材料翻译成不同的语言。招募不同样本的更大障碍可能是缺乏在美国和欧洲以外诊断EDS的医疗保健提供者，使潜在参与者的数量减少。需要有更多的医疗保健提供者来诊断和治疗主要由有色人种组成的国家的EDS，以及专门针对这些人群的研究。
■RR1-10.2196/53646。
