Abstract
AbstractBackgroundPersons with rare disorders, such as tetralogy of Fallot, often feel socially isolated due to poor public awareness of the disorder. On 1 May 2017, Jimmy Kimmel aired a segment on Jimmy Kimmel Live! highlighting the impact of tetralogy of Fallot on his son and how the public can learn more about the disorder.MethodsWe tracked public interest in tetralogy of Fallot using Google Trends and Twitter after the episode and constructed an autoregressive integrated moving average algorithm to calculate search volumes had Kimmel not aired the episode.ResultsGoogle searches and the number of Tweets for tetralogy of Fallot increased by 3063.27% and 4672.62%, respectively, above expected.ConclusionsOur findings indicate that television talk shows may represent strong outlets for increasing public awareness of rare disorders.
Highlights
Rare diseases affect nearly 30 million Americans and present a significant physical, financial, and emotional impact on patients which is further compounded by lack of research and public awareness (Griggs et al, 2009)
On 1 May 2017, Jimmy Kimmel Live! aired an episode in which Kimmel explained that his son, William Kimmel, was born with tetralogy of Fallot - a rare disorder of the heart classically defined as the combination of pulmonary stenosis, ventricular septal defect, overriding aorta, and right ventricular hypertrophy
The day after the episode aired (May 2, 2017), relative search interest from Google Trends for “Tetralogy of Fallot” peaked 96.84 points above the forecasted value (3.16; 95% CI 1.26 - 5.06); an increase of 3063.27% (Figure 1)
Summary
Rare diseases affect nearly 30 million Americans and present a significant physical, financial, and emotional impact on patients which is further compounded by lack of research and public awareness (Griggs et al, 2009). One study analyzed the effects of season releases of a popular streaming show including a main actor having cleidocranial dysplasia, a disorder affecting roughly 1 per million people, on public awareness and found a 94% increase in Google searches following the episode’s release (Johnson et al, 2020). This suggests actors may play a role in educating the public on rare diseases. Methods: We tracked public interest in tetralogy of Fallot using Google Trends and Twitter after the episode and constructed an autoregressive integrated moving average algorithm to calculate search volumes had Kimmel not aired the episode. Conclusions: Our findings indicate that television talk shows may represent strong outlets for increasing public awareness of rare disorders.
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