Educational Gaps and Opportunities for PIDD Awareness Among ENT: Insights from a US Survey

Introduction: Primary immunodeficiency disorders (PIDD) result from inherited defects in the immune system and often manifests as chronic ear, nose, and throat infections. Early diagnosis prevents complications, improves morbidity and quality of life. Results of a survey established clinical practice by ear, nose, and throat specialists’ (ENT) and revealed gaps between frequency of encountering patients with PIDD and guidelines awareness. Here, we explored ENT perspectives on education opportunities to enhance recognition and management of PIDD patients.

Methods: A US national blinded survey was conducted between October 2024 to March 2025 to evaluate ENTs’ interest in research and educational opportunities for patients with PIDD.

Results: 50 US-based ENT participated and were distributed across all regions and settings. Nearly half of responding ENT reported learning about PIDD in their careers, and 74% have encountered PIDD patients in practice. However, only 12% were aware of recent studies linking ENT and PIDD. ENT attended AAO-HNS (66%), COSM (14%), ARS (12%) and AAOA (12%). Over half of respondents engaged with educational opportunities when suspecting PIDD; 20% never engaged with educational materials and 6% did so regularly. While most respondents (66%) did not identify unmet needs in PIDD diagnosis, 27% cited gaps in healthcare providers awareness, education resources for work-up and treatment, and updated guideline recommendations. The preferred learning formats were case-based learning, tutorials, and videos.

Conclusions: ENTs play a key role in early recognition and referral of PIDD patients, but limited awareness of recent research and reactive educational engagement may delay timely diagnosis and optimal management.