Olfactory loss in people with cystic fibrosis: Community perceptions and impact

Jessa E Miller; Christine M Liu; Edith T Zemanick; Jason C Woods; Christopher H Goss; Jennifer L Taylor-Cousar; Daniel M Beswick

doi:10.1016/j.jcf.2023.11.006

Olfactory loss in people with cystic fibrosis: Community perceptions and impact

J Cyst Fibros. 2023 Nov 17:S1569-1993(23)01677-6. doi: 10.1016/j.jcf.2023.11.006. Online ahead of print.

Authors

Jessa E Miller¹, Christine M Liu², Edith T Zemanick³, Jason C Woods⁴, Christopher H Goss⁵, Jennifer L Taylor-Cousar⁶, Daniel M Beswick⁷

Affiliations

¹ University of California, Los Angeles, Department of Otolaryngology-Head and Neck Surgery, Los Angeles, CA, USA.
² University of California, Los Angeles, David Geffen School of Medicine, Los Angeles, CA, USA.
³ University of Colorado School of Medicine, Department of Pediatrics, Aurora, CO, USA.
⁴ Cincinnati Children's Hospital Medical Center, Department of Radiology, Cincinnati, OH, USA.
⁵ University of Washington, Department of Pulmonary Medicine, Seattle, WA, USA.
⁶ National Jewish Health, Departments of Medicine and Pediatrics, Denver, CO, USA; University of Colorado Anschutz Medical Campus, Departments of Internal Medicine and Pediatrics, Aurora, CO, USA.
⁷ University of California, Los Angeles, Department of Otolaryngology-Head and Neck Surgery, Los Angeles, CA, USA. Electronic address: dbeswick@mednet.ucla.edu.

PMID: 37981480
DOI: 10.1016/j.jcf.2023.11.006

Abstract

Background: Olfactory dysfunction (OD) is prevalent in people with cystic fibrosis (PwCF) and can negatively impact quality-of-life (QOL). This study evaluated perceptions of OD, investigated how OD impacts QOL, and assessed willingness to participate in OD research among the CF community.

Methods: A 21-question survey was distributed through the CF Foundation's Community Voice program in 2023. The survey included questions on olfaction and interest in research. The Brief Questionnaire of Olfactory Disorders (BQOD), a validated person-reported outcome measure to assess QOL, was included.

Results: Seventy-six responses were received. Overall, 91% (69/76) reported olfactory problems. Mean BQOD score was 5.0 (standard deviation=4.8), indicating olfactory QOL impairment was present. Ninety-five percent (72/76) reported research on OD is worthwhile and were willing to participate in research.

Conclusion: Among PwCF, OD and olfactory-specific QOL impairments are prevalent. There is strong interest and willingness to participate in OD research among the CF community.

Keywords: Cystic fibrosis; Olfaction; Olfactory dysfunction; Quality of life; Smell.