Illness Burden in Adults With Cystic Fibrosis: Associations With Sex, Race/Ethnicity, and Socioeconomic Risk Factors

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BACKGROUND: Illness burden in cystic fibrosis (CF) is variable and sociodemographic characteristics-including female sex, minoritized race/ethnicity, and lower socioeconomic status (SES)-may increase the risk of burden. More information about these associations is needed. METHODS: This secondary analysis used baseline data from adults with CF (AwCF) participating in a palliative care implementation trial who completed questionnaires, including the Integrated Palliative Care Outcome Scale, Memorial Symptom Assessment Scale-Cystic Fibrosis, and Cystic Fibrosis Questionnaire-Revised. Bivariate analyses and general linear models evaluated associations between measures and potential vulnerabilities. RESULTS: There were 273 AwCF (mean [SD] age: 38.7 [14.5] years; female: 59.3%; minoritized race/ethnicity: 10.6%; taking CFTR modulators: 84.2%; advanced illness: 20.9%). In bivariate analyses, females had more palliative care needs, higher symptom burden, and lower quality of life (QOL) than males. AwCF with minoritized race/ethnicity had less modulator use, more hospitalizations, and poorer QOL. Socioeconomic risk factors (SRFs; measured by a composite with 3 SES-related variables) were associated with more advanced disease, more palliative care needs, poorer QOL, and anxiety. In multivariate models adjusting for modulator treatment and advanced illness, female sex was associated with higher palliative care needs, higher symptom burden, and lower respiratory QOL; having ≥ 2 SRFs was associated with higher needs and lower QOL; and minoritized race/ethnicity was not associated with any of these measures. CONCLUSIONS: Female sex and SRFs are independently associated with adults' CF illness burden. Burden associated with race/ethnicity may be mediated by other variables. These vulnerabilities should be investigated further and inform care.

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