Patient and parent voices in tetralogy of Fallot: A French social media analysis

AIMS: To analyse French-language public online conversations about tetralogy of Fallot (TOF), with emphasis on patient and parent concerns, emotional tone, and information needs relevant to congenital cardiovascular care. METHODS AND RESULTS: We conducted a retrospective observational study using the Observatoire Social du Patient database, which captures anonymised public posts from French-language forums and social media. Posts published between December 2014 and November 2024 containing terms related to TOF were extracted and analysed using natural language processing, thematic ontologies, and sentiment analysis. A total of 1291 messages from 360 unique authors were included. Parents represented 63% of authors and generated 84% of posts; women accounted for 89% of contributors. Parents most often discussed daily life, care events, and psychological state, whereas patients more frequently discussed healthcare events, physical activity, and long-term outcomes. Negative emotions, especially anxiety, fear, and uncertainty, were common around diagnosis and repeated interventions, although hope and trust in care were also present. Posts frequently contained medical terminology, suggesting substantial disease knowledge. However, 328 posts (25%) included questions, mainly about the number and timing of operations, prognosis, daily life, and pregnancy. CONCLUSION: Social media testimonies reveal persistent psychosocial and informational needs among people affected by TOF. Integrating these patient and parent voices into routine congenital cardiac care may support more anticipatory communication, psychosocial support, and patient-centred digital education.