(0838) Travel and Cost as Barriers to Care in Subglottic Stenosis

Introduction: Idiopathic subglottic stenosis (iSGS) is a chronic, progressive, inflammatory scarring process of the upper airway that often gets misdiagnosed due to its rarity leading to worsening symptoms. ​​The primary objectives of this study were to examine (1) the role access to subspecialty care plays in the delay, and (2) whether patient experience is affected by travel and costs associated with diagnosis.

Methods: A 26 question survey was distributed to 2,657 research participants in an international laryngotracheal stenosis online support community. Data collection from 12/20/23-1/21/24 included length to diagnosis and treatment, average time traveled for office visits and procedures, estimated cost of office visits and procedures, reason for travel, type of provider managing care, and health insurance status. Descriptive and inferential statistics were used to describe data.

Results: Seven hundred ninety responses were obtained from 787 females, 2 males, and 1 non-binary individual with 19% in the 51-55 age range. Respondents were from the United States (64%), Canada (12%), and the United Kingdom (11%) with Caucasian ethnicity (95%). 50% had symptoms for more than 2 years prior to diagnosis.
60% of respondents traveled five or more times for an office visit with 54% of them traveling farther than 1 hour from home. 54% traveled at least an hour for surgery. 14% paid more than 1,000 in their local currency for procedural care. Reasons for travel included no trained physicians in the area, recommendation to a certain institution/surgeon, and finding an experienced physician. 66% were diagnosed by a general otolaryngologist with 31% of patients being managed by a laryngologist. 85% had health insurance.

Conclusions: Patients with iSGS face delay in diagnosis due to rarity and provider familiarity with their disease process. This study shows that access to care continues to be an issue for patients as it relates to travel and cost. Further studies can evaluate how this access to care affects disease progression, symptomatology, and overall quality-of-life. This supports the need for wider distribution of airway surgeons.