Concerns over difficulty breathing have the greatest impact on cystic fibrosis patients’ decision-making with respect to the treatment of pulmonary exacerbations, research in the Journal of Cystic Fibrosis showed.

Given the varying toxicities and burdens of therapeutics for cystic fibrosis, researchers sought to determine how these patients valued different aspects of their health status and the trade-offs they made when choosing between alternative therapies. Toward that end, researchers conducted a discrete choice experiment survey (DCE) in order quantify how those with CF and their caregivers hypothetically viewed the relative importance of outcomes resulting from treatment of CF pulmonary exacerbations.

Researchers’ ultimate goal was creation of patient-centered instruments for comparing treatment strategies for children and adults with CF.  

The study involved 362 participants recruited from CF clinics at Perth Children’s Hospital and Sir Charles Gairdner Hospital in Australia and via consumer and research networks across Australia and the United Kingdom. Participants included 99 people with CF and 107 caregivers of children with CF, who completed all study tasks in the survey.

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