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

J Cyst Fibros. 2024 Nov;23(6):1195-1198. doi: 10.1016/j.jcf.2023.11.006. Epub 2023 Nov 18.

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.

MeSH terms

  • Adolescent
  • Adult
  • Cystic Fibrosis* / complications
  • Cystic Fibrosis* / psychology
  • Female
  • Humans
  • Male
  • Middle Aged
  • Olfaction Disorders* / epidemiology
  • Olfaction Disorders* / etiology
  • Olfaction Disorders* / psychology
  • Quality of Life*
  • Surveys and Questionnaires