Patient-reported measures, such as quality of life (QoL), are essential to improving care for children with congenital heart disease (CHD). This study aimed to explore the feasibility of engaging patients with CHD through Internet and social media to collect QoL data. To this end, we disseminated a QoL survey online, hoping to reach a broad population of individuals living with CHD in Quebec.
We found that the reach of such a social media strategy was limited. Out of an estimated 50,000 eligible patients in the province, only 68 completed the online survey. Despite the low response rate, participants expressed appreciation for being asked about their quality of life. They found the survey easy to complete and indicated that they would recommend it to others.
Given the importance of QoL data for personalizing care, the findings of the QUALITY oriented us toward alternative strategies. Our next steps will focus on clinic-based approaches.
The results of this study are published here: Watelle L et al. (2025). Proof-of-Concept of Online-Only Enrollment for Collecting Longitudinal Patient-Reported Outcomes in Young Individuals With Congenital Heart Disease. CJC Pediatric and Congenital Heart Disease.
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