Streamlining care in cystic fibrosis: survey of otolaryngologist, pulmonologist, and patient experiences

Abstract

BackgroundCare 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.MethodsA 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.ResultsRespondents 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%).ConclusionOur 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.

The management of cystic fibrosis chronic rhinosinusitis: An evidenced‐based review with recommendations

“…Sixty‐seven percent of prescribers advocated the use of isotonic nasal saline irrigations, whereas 29% recommended the use of hypertonic saline. Of the surveyed CF patients and caregivers, 65% of patients reported actually using irrigations, and the majority of them used irrigations combined with steroids or antibiotic rinses 31 …”

“…Of the surveyed CF patients and caregivers, 65% of patients reported actually using irrigations, and the majority of them used irrigations combined with steroids or antibiotic rinses. 31 Aanaes et al investigated the extent of nasal saline delivery after ESS in patients with CF. 32 Saline was mixed with a radioactive tracer and delivered via a NeilMed Sinus Rinse kit in an upright position, and patients were then immobilized in a supine position.…”

Pädiatrische Rhinologie

“…Conservative approaches to sinunasal problems for people with CF are diverse, but high-quality studies with large case numbers are lacking compared with therapy for lung disease [127]. The following list summarizes the most common approaches [128][129][130][131][132]: ▪ regular rinsing of the nasal passages with saline solutions ▪ sinunasal inhalation with isotonic and hypertonic saline solution ▪ Sinunasal inhalation with dornase alfa ▪ Topical therapy, sinunasal inhalation, or oral therapy with steroids. ▪ Sinunasal inhalation or systemic therapy with antibiotics ▪ Therapy with CFTR modulators For sinunasal inhalation, systems with pulsed delivery of inhalate such as the Pari Sinus are preferred in order to achieve good sinuidal deposition.…”

Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience

“…Targeted surveys have also been used to obtain broader feedback from the individuals living with the disease. In 2017 and 2018, the CFF conducted surveys of individuals with CF, family members, and health care providers to inform the scope of upcoming guidelines [ 23 - 25 ]. These surveys provided insight that was otherwise unknown to the clinical committee members and informed the scope of the guidelines.…”