Answering the call to address cystic fibrosis treatment burden in the era of highly effective CFTR modulator therapy.

ABSTRACT:

Background

We recognize an unprecedented opportunity to study the effects of withdrawing one or more chronic treatments in people with CF (PwCF) who benefit greatly from CFTR modulator therapy, but feasibility and acceptance of such a study within the community is unknown.

Methods

We surveyed PwCF, their families, and their acquaintances between November 16, 2018, and December 2, 2018, and CF clinicians between December 19, 2018, and January 2, 2019, about treatment withdrawal research. We sought feedback from these groups about their level of interest in this research, the consistency with which they were taking modulator and non-modulator treatments, the ways in which they conceptualized health changes, and what chronic non-modulator treatments they were most interested in

SUBMITTER: Gifford AH 

PROVIDER: S-EPMC7239731 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature