Abstract
Physical outcome measures alone do not capture the complexities of what it means to “live well” with Cystic Fibrosis. It is crucial to understand what matters most to patients with regards to their health and wellbeing in order to guide high quality care for the individual and also evaluate the services that we offer to our patients. Previous work by our team (“Co-producing a health and wellbeing assessment tool for adults with CF,” Massey-Chase et al, ECFS 2019) occurred before the wide roll out of modulators and the COVID-19 pandemic. We therefore wanted to understand what outcomes matter most to patients at the current time.
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