Assessing Public Awareness and Understanding of Dysphagia: A Representative Survey of US Adults

Sonja M. Molfenter, R. Brynn Jones-Rastelli, Arie Barfield, Drew Cooks, Claire Crossman, Kaiyn Jackson, D’manda Price, Journee C. Robinson, Aaron M. Johnson

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose: Dysphagia is a commonly occurring medical condition estimated to occur in between and 10% adults in the US. Despite this relatively high prevalence, the general population’s understanding of this condition is currently unknown. Our aims were to (a) conduct a large-scale survey to determine the public’s awareness and understanding of dysphagia in comparison to other three other health conditions and (b) compare this knowledge to relative prevalence rates of the conditions. Methods: The survey was designed to measure four constructs of interest comparing dysphagia with insomnia, vertigo and ataxia. Constructs included: (1) Knowledge of the Condition, (2) Source of Knowledge, (3) Health Impact, (4) Treating Medical Professionals. The survey was launched via Qualtrics™ software and participants were recruited and paid using Prolific™. Descriptive statistics were used to compare participants knowledge of dysphagia with the other conditions. To obtain relative prevalence rates, Cosmos was used to quantify the number of Epic-based patient encounters with any ICD-10 code for each condition in 2023 and expressed as a percent of all patient encounters in the US in 2023. Results: 2000 adults (n = 1030 female) aged 18–95 (median 49, IQR = 33–62) completed our survey. When asked, ‘Do you know what ____ is’? participants expressed higher familiarity with insomnia (99%) and vertigo (87%) in comparison to dysphagia (25%) and ataxia (18%). From a list of 8 options, 99% and 94% participants selected the correct impairment for insomnia and vertigo respectively, compared with 44% correct for dysphagia and 22% for ataxia. Participants selected an appropriate healthcare provider for dysphagia 47% of the time compared with 74% for insomnia, 56% for vertigo and 36% for ataxia. When asked to identify up to 3 sequelae (from a list of 9), only 4% of participants were able to correctly identify all three for dysphagia, in comparison to 16% for ataxia, 27% for vertigo and 60% for insomnia. The Cosmos analysis revealed that while insomnia had the highest prevalence in 2023 (5.5% of patient encounters), dysphagia occurred much more frequently (2.4%) than vertigo (0.68%) and ataxia (0.24%). Conclusions: These discrepancies highlight a notable gap in public awareness between dysphagia and more recognized conditions of insomnia and vertigo, even though the prevalence of dysphagia is higher than vertigo. Increasing public awareness of dysphagia is vital for early intervention, increasing quality of life, and advocating for equitable access to healthcare resources.

Original languageEnglish (US)
JournalDysphagia
DOIs
StateAccepted/In press - 2025

Keywords

  • Advocacy
  • Deglutition
  • Deglutition disorders
  • Dysphagia
  • Public awareness
  • Public knowledge
  • Survey
  • Swallowing impairment

ASJC Scopus subject areas

  • Otorhinolaryngology
  • Gastroenterology
  • Speech and Hearing

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