Navigating Pathways to Diagnosis in Idiopathic Subglottic Stenosis: A Qualitative Study

Area of Science:

• Otolaryngology
• Rare Diseases
• Health Services Research

Background:

• Idiopathic subglottic stenosis (iSGS) is a rare condition with prolonged diagnosis times, creating a significant patient burden.
• The diagnostic odyssey for rare diseases can average years, impacting patient health and healthcare resource utilization.

Purpose of the Study:

• To identify key drivers of diagnostic odyssey length in idiopathic subglottic stenosis using qualitative methods.
• To inform interventions aimed at improving healthcare delivery and reducing diagnosis time for iSGS patients.

Main Methods:

• Qualitative study employing semi-structured interviews with 30 iSGS patients.
• Participants recruited from a large, prospective multicenter trial.
• Directed content analysis used to examine patient diagnostic pathways.

Main Results:

• Median time to diagnosis for iSGS was 21 months, with patients seeing an average of four providers.
• Appropriate referrals to otolaryngology by specialists or primary care providers shortened the diagnostic odyssey.
• Patient social support and provider referral willingness were critical factors in accelerating diagnosis.

Conclusions:

• Patient social capital and provider referral practices significantly influence iSGS diagnostic odyssey length.
• Medical paternalism and gatekeeping by providers can prolong diagnosis times.
• Further research is needed on patient-provider and provider-provider relationships in iSGS diagnosis.