Study Status: RECRUITING
Recruit Status: RECRUITING
Study Type: INTERVENTIONAL
Official Title: Preparation for Lung Transplant Discussions and Decisions Among People With Cystic Fibrosis
Brief Summary:
Lung transplant is an option for treating end-stage lung disease in cystic fibrosis (CF).
In the United States, more people with CF and low lung function die each year than undergo lung transplant.
More than half of people with CF who die without a lung transplant were never referred for consideration.
Patient preference not to undergo lung transplant may account for 25-40% of decisions to defer referral.
Rates of death without transplant are higher for people with CF who are members of marginalized communities, including those with Black race, Hispanic ethnicity, or low socioeconomic status.
Increasing awareness of lung transplant among people with CF, and promoting understanding of the risks and benefits of transplant, can potentially reduce the number of people with CF who die without a lung transplant.
The CF Foundation (CFF) lung transplant referral guidelines were developed to optimize the timing of referral for lung transplant.
These guidelines recommend annual conversations with people with CF once their forced expiratory volume in one second (FEV1) is <50% predicted.
Considering lung transplant as a treatment option before it is medically needed will allow more time to learn about lung transplant and address any barriers to lung transplant that may exist.
Investigators are interested in understanding how people with CF use lung transplant educational resources and how one prepares for having discussions and/or making decisions about lung transplant as a treatment option for advanced CF.
The purpose of this study is to test whether a research website improves patient preparedness for discussions about lung transplant.
Investigators also aim to understand whether there are unique factors that affect people with CF from communities with decreased access to transplant ("communities of concern").
Study involvement will span 6 months and study activities will involve the following: