Parental and provider perspectives on social media about ankyloglossia

To investigate and identify the concerns and opinions expressed in both parental and provider posts on social media about ankyloglossia.

In this study, posts on Twitter between 1/1/2008 and 12/31/2018 were collected using search terms and hashtags specific to pediatric ankyloglossia. The search terms included a primary phrase to indicate ankyloglossia along with a pediatric identifier. Tweets that met inclusion criteria were analyzed qualitatively via conventional content analysis. After all tweets were categorized, descriptive statistics were completed to determine frequency of each theme.

In total, 5951 tweets were retrieved. Parents authored 982 (16.5%) of tweets, and 782 (13.1%) were by providers. The remaining 4187 tweets did not fit criteria for either the parent or provider groups. Amongst parents, the most common themes mentioned were feeding problems (309 tweets [32.4%]), followed by lip tie (215 [22.5%]), anxiety or emotion (207 [21.7%]), and maternal breastfeeding complications (127 [13.3%]). The number of tweets about ankyloglossia and frenotomy in 2018 had increased by 2395% since 2009. Amongst providers, 215 tweets were judged by the coders to provide an opinion on ankyloglossia, of which 94.4% had a pro-frenotomy sentiment. When a specialty was identified, tweets were most often by dentists (250 [31.9%]), followed by lactation consultants and International Board Certified Lactation Consultants (IBCLCs) (157 [29.7%]) and non-otolaryngologist physicians (79 [10.1%]). Otolaryngologists accounted for 8.7% (68 tweets) of posts about ankyloglossia.

Our findings demonstrate the spectrum of opinions that exist among both parents and providers about ankyloglossia. This can aid in shared-decision making by enabling the counseling provider to guide recommendations based on medical evidence with the understanding that there is a large amount of non-scientific information and opinions disseminated that may be shaping decisions.