Public Awareness of a Vision-Threatening Toxicity: Infodemiology in Pentosan Polysulfate Maculopathy (Preprint)

BACKGROUND In this age of information (and misinformation), the ophthalmology community faces an ongoing challenge in shaping the distribution of information regarding ophthalmic health to the lay public. Our infodemiology study yields unique insights into factors associated with public awareness of PPS maculopathy and provides valuable insights for public health efforts. OBJECTIVE To explore factors associated with increased public awareness of pentosan polysulfate (PPS) maculopathy METHODS This cross-sectional study assessed global trends in internet search queries regarding PPS maculopathy using Google Trends from September 2017 to August 2022, with results reported in terms of relative search volume (RSV). Trends in search volumes were assessed following notable events related to the discovery of PPS maculopathy, using the mean RSV prior to the initial e-publication on PPS maculopathy as the comparator. RESULTS The mean (SD) global RSV for “pentosan polysulfate sodium,” “Elmiron,” “Elmiron side effects,” and “Elmiron lawsuit” over the study period were 5.03 (5.72), 47.45 (16.5), 2.23 (2.16), and 2.06 (2.16), respectively. Qualitatively, there was an approximate 22-month latency period between the initial e-publication regarding PPS maculopathy and a sustained rise in RSV for the search term “Elmiron.” Compared to baseline mean (SD) global RSV of 35.08 (5.03) for “Elmiron,” the mean (SD) RSV was statistically significantly higher in the month following the initial lawsuit filing regarding PPS maculopathy [50.5 (2.38); P < .001] and the drug label change [80.25 (6.55); P < .01)], and not significantly higher following other events such as the original publication regarding PPS maculopathy. CONCLUSIONS Publication in traditional scientific media did not appreciably impact internet search volumes, while other ancillary news events were associated with significant rises. These findings may inform future efforts to educate the public regarding time-sensitive public health concerns.