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

•Many people with cystic fibrosis report olfactory problems when queried.•Olfactory quality of life impairment is prevalent in certain people with CF.•Improving olfactory dysfunction is an important problem for many people with CF.•Many people with CF are enthusiastic about participating in olfactor...

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Bibliographic Details
Published in:Journal of cystic fibrosis 2024-11, Vol.23 (6), p.1195-1198
Main Authors: Miller, Jessa E., Liu, Christine M., Zemanick, Edith T., Woods, Jason C., Goss, Christopher H., Taylor-Cousar, Jennifer L., Beswick, Daniel M.
Format: Article
Language:English
Subjects:
Adolescent
Adult
Cystic fibrosis
Cystic Fibrosis - complications
Cystic Fibrosis - psychology
Female
Humans
Male
Middle Aged
Olfaction
Olfaction Disorders - epidemiology
Olfaction Disorders - etiology
Olfaction Disorders - psychology
Olfactory dysfunction
Quality of Life
Smell
Surveys and Questionnaires
Citations: Items that this one cites
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Summary:•Many people with cystic fibrosis report olfactory problems when queried.•Olfactory quality of life impairment is prevalent in certain people with CF.•Improving olfactory dysfunction is an important problem for many people with CF.•Many people with CF are enthusiastic about participating in olfactory research. 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. 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. 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. 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.
ISSN:1569-1993
1873-5010
1873-5010
DOI:10.1016/j.jcf.2023.11.006