Sponsor
Grant support from CF Foundation related to this work BESWIC20A0. Todd E. Bodner: he has received grant support from CF Foundation related to this work in the past 36 months (BESWICZOAD). Naweed I. Chowdhury: unrelated to this work, he has received grant support from the Burroughs Wellcome Fund, American Rhinologic Society, and the National Cancer Institute. Anne E. Getz: none to disclose. Peter H. Hwang: consultant for Stryker, Medtronic, Slate Therapeutics. Equity ownership in Sound Health Systems. Ashoke Khanwalkar: none to disclose. Adam J. Kimple: consultant for Acclarent. Jivianne T. Lee: none to disclose. Douglas A. Li: in the last 36 months, he has received grant support from the CF Foundation unrelated to this work. Meghan Norris, Jayakar V. Nayak, and Cameran Owens: none to disclose. Zara M. Patel: consultant/advisory board for Optinose, Medtronic, Dianesis, Wyndly, Third Wave Therapeutics, Regeneron/Sanofi, Mediflix, ConsumerMedical. Equity in Olfera Therapeutics. Rodney J. Schlosser: consultant for OptiNose, Medtronic, Stryker, Cyrano. Medical Directory for Healthy Humming. Kristine A. Smith: in the last 24 months, consultant for SanofiGenzyme. Timothy L. Smith: no disclosures. Zachary M. Soler: consultant for OptiNose, Regeneron, SanofiGenzyme, and Lyra. Medical Directory for Healthy Humming. Grant A. Turner: in the last 36 months, he has received grants from the CF Foundation unrelated to this work. Marilene B. Wang: none related to this work. Jennifer L. Taylor-Cousar: in the last 36 months, she has received grants from the CF Foundation related to this work as well as for work unrelated to the manuscript. Unrelated to this work, she has received grants to her institution from Vertex Pharmaceuticals Incorporated, Eloxx, and 4DMT. She has received fees from Vertex Pharmaceuticals Incorporated related to consultation on clinical research design, participation on advisory boards, and speaking engagements; and has served on advisory boards and/or provided clinical trial design consultation for Insmed, 4DMT, and AbbVie. She serves on a DMC for AbbVie. She serves as the adult patient care representative to the CFF Board of Trustees, and on the CF Foundation's Clinical Research Executive Committee, Clinical Research Advisory Board, Racial Justice Working Group and as immediate past chair of the CF TDN's Sexual Health, Reproduction and Gender Research Working Group, on the scientific advisory board for Emily's Entourage, and on the ATS Respiratory Health Awards, Scientific Grant Review and Clinical Problems Assembly Programming Committees.
Published In
International Forum of Allergy & Rhinology
Document Type
Article
Publication Date
1-2024
Subjects
Chronic rhinosinusitis, Sinus surgery outcome assessment (healthcare), Cytokine -- Biomarker
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.
Rights
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. © 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.
Locate the Document
DOI
10.1002/alr.23332
Persistent Identifier
https://archives.pdx.edu/ds/psu/41436
Citation Details
Liu, C. M., Han, E. J., Fischer, J. L., Mace, J. C., Mattos, J. L., Markarian, K., ... & Beswick, D. M. (2024, February). Patient perspectives on chronic rhinosinusitis in cystic fibrosis: Symptom prioritization in the era of highly effective modulator therapy. In International Forum of Allergy & Rhinology.