P008 Critical Disease Burdens of Australian Adults with cystic fibrosis: results from an online survey

Objectives: The objective of this study was to conduct a web-based questionnaire to investigate patient-reported phenotypes and disease burdens of patients living in Australia with cystic fibrosis using a case-control study design. Methods: An online questionnaire was distributed to patients with CF and healthy control subjects. Overall health rating, medications, family history, education, clinical indicators of disease, and different symptoms, including their severity and frequency, were evaluated. Results: There was a total of 119 respondents consisting of 59 CF patients and 60 controls. The CF cohort had significantly lower tertiary educational levels compared to controls. The analysis specific to the CF cohort depicted a significant correlation between the frequency of hospitalisations and the level of education in the CF cohort. Of 26 patient-reported symptoms of CF that were analysed, 14 were significantly higher in the CF patients. The CF cohort reporting symptoms of chronic pain (25%) described an increase in the burden of disease, depicting a 30% longer mean hospitalisation, increased consumption of medications and significant relationships with four other symptoms, including muscle aches, digestive issues, pancreatic insufficiency and abdominal swelling. Conclusions: The nationwide survey identified a diverse range of clinical manifestations experienced by the Australian CF population. Chronic pain, linked to aging and the changing landscape of disease, was a significant indicator of the burden of disease. A comprehensive understanding of the phenotypic profiles and variability will contribute to future research and provide insights into the impacts of disease and the burden of therapy, particularly in children, at the start of their health journey.