Proof-of-Concept of Online-Only Enrollment for Collecting Longitudinal Patient-Reported Outcomes in Young Individuals...

The importance of patient-reported outcomes (PRO) in research in congenital heart disease (CHD) is being increasingly recognized. The resources needed for direct, in-clinic enrollment of study participants are important barriers. Social media enable new ways to interact with potential participants. We aimed to test the feasibility of collecting PRO without direct contact by the research team, with subsequent linkage with the Quebec CHD Registry.

We targeted all patients with CHD aged ≥14 years and parent of a child with CHD aged 5-17 years who received cardiac care in Québec. We disseminated a link to an online survey consisting of 4 PRO instruments on the internet and by displaying in pediatric cardiology waiting rooms. No direct contact by a study team was done. The data were subsequently linked to a clinical registry of >50,000 patients.

A total of 160 people accessed the study, of whom 68 signed the consent form. A plateau of enrollment was quickly reached despite reminders. A total of 44 participants provided information for linkage to the clinical registry. The study had an over-representation of severe disease cases and lacked ethnic diversity. The retention rate at 1 year was 25%. Health-related quality of life was consistent with other CHD cohorts, and participants reported good satisfaction with life.

Recruiting participants with CHD without direct contact was ineffective at population level. Several factors may explain these results, including a weaker community network among participants than anticipated, apprehension about sharing personal information online, and difficulty effectively targeting participants on the internet.