Patient perspectives on chronic rhinosinusitis in cystic fibrosis: Symptom prioritization in the era of highly effective modulator therapy.

Abstract

BACKGROUND:

Chronic rhinosinusitis (CRS) is common in people with cystic fibrosis (PwCF). Rhinologic symptom prioritization and areas that influence CRS treatment choices, including pursuing endoscopic sinus surgery (ESS), remain understudied.

METHODS:

Adult PwCF + CRS were enrolled at eight centers into a prospective, observational study (2019-2023). Participants were administered the 22-SinoNasal Outcome Test (SNOT-22) survey and a modified SNOT-22 instrument examining symptom importance. We determined importance rankings for individual symptoms and SNOT-22 symptom importance subdomains in two sets of subgroups-those pursuing ESS versus continuing medical management (CMT), and those on elexacaftor/tezacaftor/ivacaftor (ETI) versus not on ETI.

RESULTS:

Among 69 participants, the highest priorities were nasal congestion (n = 48, 69.6% important), post-nasal discharge (32, 46.4%), facial pain (29, 43.3%), waking up tired (27, 39.1%), and fatigue (26, 37.7%). Those electing surgery (n = 23) prioritized sleep and psychological dysfunction symptoms compared to those pursuing CMT (n = 49) (sleep median score = 19.0 [interquartile range: 12.0, 25.0] vs. 4.5 [0.0, 12.8]; p < 0.0001; psychological = 17.0 [7.0, 26.0] vs. 7.0 [0.0, 15.8]; p = 0.002). ETI users had comparable SNOT-22 total symptom importance scores to non-ETI users (p = 0.14). Non-ETI users (n = 34) showed a trend toward prioritizing sleep symptoms compared to ETI users (n = 35) (13.0 [2.8, 22.3] vs. 6.0 [2.0, 17.0]; p = 0.055).

CONCLUSIONS:

Nasal congestion and post-nasal discharge were top priorities reported by PwCF + CRS. Those electing surgery prioritized sleep and psychological symptoms, highlighting their importance in pre-operative discussions. Non-ETI users' prioritization of sleep improvement may highlight their unique disease impact and therapeutic needs; however, additional investigation is required.

• Authors: Christine M Liu, Ethan J Han, Jakob L Fischer, Jess C Mace, Jose L Mattos, Karolin Markarian, Jeremiah A Alt, Todd E Bodner, Naweed I Chowdhury, Patricia H Eshaghian, Anne E Getz, Peter H Hwang, Ashoke Khanwalkar, Adam J Kimple, Jivianne T Lee, Douglas A Li, Meghan Norris, Jayakar V Nayak, Cameran Owens, Zara M Patel, Katie Poch, Rodney J Schlosser, Kristine A Smith, Timothy L Smith, Zachary M Soler, Jeffrey D Suh, Grant A Turner, Marilene B Wang, Jennifer L Taylor-Cousar, Milene T Saavedra, Daniel M Beswick
• Journal: International forum of allergy & rhinology (Int Forum Allergy Rhinol) (Feb 11 2024) ISSN: 2042-6984 [Electronic] United States
• PMID: 38343143 (Publication Type: Journal Article)
• Copyright: © 2024 The Authors. International Forum of Allergy & Rhinology published by Wiley Periodicals LLC on behalf of American Academy of Otolaryngic Allergy and American Rhinologic Society.