Background: Care coordination for cystic fibrosis (CF) is essential. The objectives of this study were to: (1) compare otolaryngologists' and pulmonlogists' understanding of long-term chronic rhinosinusitis (CRS) management; and (2) query patient perceptions of otolaryngologic care and CRS.
Methods: A cross-sectional survey was administered by the Cystic Fibrosis Foundation in 2018 to patients with CF or their caregivers, otolaryngologists, and pulmonologists. Statistical analysis was performed comparing specialists. Descriptive statistics were computed for patient/caregiver-reported data.
Results: Respondents included 126 otolaryngologists, 115 pulmonologists, and 186 patients with CF or their caregivers. Pulmonologists had greater experience caring for CF patients compared with otolaryngologists (66.7% vs 43.2% with 13+ years of experience, respectively), but more otolaryngologists cared for both adult and pediatric CF patients (39.2% vs 10.4%, respectively). Significantly more otolaryngologists advocated for establishing otolaryngologic care at time of CF diagnosis (64.8%) compared with pulmonologists (14.4%, p < 0.001), of whom 60.4% recommended otolaryngologist referral when sinonasal symptoms affect quality of life. More otolaryngologists perceived sinus surgery as beneficial for pulmonary function (74.5% vs 57.7%, p = 0.009); 60.8% of patients first sought otolaryngologic care in infancy or childhood (<13 years). Median number of sinus surgeries was 3 (interquartile range, 2-5). The most common perceived benefits of surgery according to patients/caregivers included improved breathing (31.2%) and improved sinonasal symptoms (23.7%). Top patients/caregiver otolaryngologic priorities included symptom/infection control (49.0%) and care coordination (15.0%).
Conclusion: Our results highlight variable patient/caregiver experiences, and suggest that otolaryngologist and pulmonologist perceptions of CF otolaryngologic care also differ in some respects requiring improved interspecialty coordination/education.
Keywords: chronic rhinosinusitis; cystic fibrosis; genetic; hereditary; multidisciplinary care.
© 2020 ARS-AAOA, LLC.