221 - THE QUALITY STUDY: LONGITUDINAL ASSESSMENT OF QUALITY OF LIFE IN CHILDREN AND YOUNG ADULTS WITH CONGENITAL HEART DEFECTS

Background: The importance of patient-reported outcomes (PROs) in research on patients with congenital heart disease (CHD) is being increasingly recognized. The resources needed for direct, in-clinic recruitment of study participants by research teams, especially when longitudinal data are involved, are important barriers for PROs data collection. Social media enable new ways for research to interact with potential participants, which could facilitate longitudinal participation. We aimed to test the feasibility of recruiting participants and collecting PROs without direct contact by the research team using social media, with subsequent linkage with the existing Quebec CHD Registry (QCHDR).

METHODS AND RESULTS: The QUALITY study is a descriptive prospective cohort over 3 years linking PROs to the QCHDR, which includes >50,000 patients with CHD in Québec. Recruitment began in November 2022 and will continue until June 2024. Any patient with a CHD aged ≥14 years, or any parent of a child with CHD aged 5 to 17 years who received cardiac care in Québec were eligible. Recruitment was done through social media posts and advertising, websites, or posters in places frequented by patients with CHD. Partnerships with two patient advocacy groups, as well as posts on a Facebook group of parents of children with CHD, were used to spread study information among the target population. Potential participants were invited to complete an online questionnaire consisting of 4 PROs validated instruments. No direct contact by a study team was done. Recruitment is ongoing. In April 2024, 163 potential participants had accessed the online study. There were 34 parents, 32 adults, and 4 adolescents with CHD (total 70 participants) who signed the consent form. Of them, only 26 patients completed the study, and only 16 could be successfully linked to the QCHDR . The most effective recruitment method was via the internet and social media, which allowed to enrol 23/70 (44%) patients. There was very limited snowball effect, despite our efforts to spread the study on social media. A plateau of enrolment was quickly reached, despite several reminders.


Conclusion: Recruiting patients with CHD via social media without direct patient contact was not effective. Despite diversified efforts and partnerships, we only reached and recruited a small number of patients, without any snowball effect. Several factors may explain these results, including a weaker community network among CHD patients than anticipated, apprehension about sharing personal information online, and difficulty effectively target potential participants on the increasingly fragmented existing social networks.