Exploring the Lived Experiences of Individuals with Cystic Fibrosis After the Implementation of Trikafta® for Treatment.

Background: CFTR-modulators are a class of medications prescribed to people with cystic fibrosis (pwCF) who have certain genetic mutations. In 2019, Trikafta ^® was approved by the FDA and lead to significant health improvements for pwCF including increased pulmonary function, a decrease in sweat chloride levels, and an overall increase in health-related quality of life. Studies done on prior CFTR-modulators have found that modulator therapies can not only impact the physical health of pwCF, but also psychological and social aspects of life. Despite Trikafta ^® showing significant health improvements compared to prior modulators, little is known about how Trikafta ^® impacts the lived experience of pwCF. The purpose of this study is to explore how the implementation of Trikafta ^® to cystic fibrosis treatment has impacted the lived experience of pwCF and what additional resources healthcare providers should be offering to their patients Methods: Nine men and women with CF who were over the age of 18 and have been on Trikafta ^® for at least a year were recruited from an adult CF center. A semi-structured interview guide was used to conduct interviews over the Zoom platform. The data were then analyzed through inductive coding rooted in grounded theory. Results: Four themes were constructed from the data in this study: (1) “transformation in health” refers to the change in physical health the participants have noticed since starting Trikafta ^® , (2) “future planning and opportunities” highlights new opportunities becoming available and a new desire to plan for the future, (3) “impact on relationships” describes how participants felt their relationships with their partner, family, and care teams, were impacted by Trikafta ^® , (4)“new worries and struggles” describes new struggles and concerns that participants have faced. Conclusions: The data from this study provide evidence that Trikafta ^® has not only impacted pwCF on a physical level, but may also have an impact on relationships, mental health, and future planning. It also highlights the need for additional resources that CF care teams should be providing to their patients such as mental health resources, increased financial support, and shifting to a preventative care approach as pwCF grow older.