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<p>Despite the growing use of social media platforms for health information, limited research has examined how individuals affected by congenital heart disease (CHD) communicate online. The aim of this study is to characterize themes, user perspectives, sentiment, and accuracy of social media discussion related to CHD using a mixed-methods approach integrating qualitative review and natural language processing (NLP). Five hundred posts from the Reddit page <i>r/CHD</i> (2018–2025) were analyzed. Two independent raters performed thematic and perspective analysis. VADER (Valence Aware Dictionary and sEntiment Reasoner), an NLP tool optimized for social media text, quantified sentiment of posts. For posts that sought health advice, responses were graded for accuracy by two pediatric cardiologists. Post volume increased by 1,195% from 2018 To 2025. Mean sentiment score was 0.43 ± 0.60; 71.6% of posts were positive, 20.2% negative, and 8.2% neutral. There was no significant difference in sentiment between mild, moderate, or severe lesions; however, posts about multiple defects were significantly more positive (0.55 +/- 0.55, <i>p</i> = 0.017) and sentiment varied by individual diagnosis. Perspective analysis showed 39.8% of posts written by parents, 13.6% by expectant parents, 31% by CHD patients, and 1% by healthcare professionals. For posts seeking health advice, 82% of responses shared purely anecdotal experiences or deferred to clinicians, while 11% offered direct medical guidance – 67% of which were fully accurate and 29% with gross inaccuracies. These findings highlight social media as an emerging and potentially underutilized resource for understanding patient experience and information-seeking behavior in CHD.</p>

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Social Media Perspectives on Congenital Heart Disease: Integrating Thematic and Sentiment Analysis to Characterize the Digital Health Footprint

  • 期刊论文

  • 发表日期：

    2026年4月10日

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  • Calista L. Dominy,
  • Eric Takoushian,
  • Denis J. Donovan,
  • Sheila J. Carroll

摘要

Despite the growing use of social media platforms for health information, limited research has examined how individuals affected by congenital heart disease (CHD) communicate online. The aim of this study is to characterize themes, user perspectives, sentiment, and accuracy of social media discussion related to CHD using a mixed-methods approach integrating qualitative review and natural language processing (NLP). Five hundred posts from the Reddit page r/CHD (2018–2025) were analyzed. Two independent raters performed thematic and perspective analysis. VADER (Valence Aware Dictionary and sEntiment Reasoner), an NLP tool optimized for social media text, quantified sentiment of posts. For posts that sought health advice, responses were graded for accuracy by two pediatric cardiologists. Post volume increased by 1,195% from 2018 To 2025. Mean sentiment score was 0.43 ± 0.60; 71.6% of posts were positive, 20.2% negative, and 8.2% neutral. There was no significant difference in sentiment between mild, moderate, or severe lesions; however, posts about multiple defects were significantly more positive (0.55 +/- 0.55, p = 0.017) and sentiment varied by individual diagnosis. Perspective analysis showed 39.8% of posts written by parents, 13.6% by expectant parents, 31% by CHD patients, and 1% by healthcare professionals. For posts seeking health advice, 82% of responses shared purely anecdotal experiences or deferred to clinicians, while 11% offered direct medical guidance – 67% of which were fully accurate and 29% with gross inaccuracies. These findings highlight social media as an emerging and potentially underutilized resource for understanding patient experience and information-seeking behavior in CHD.