Lung Transplant Resources for Education and Decision-making for Your Cystic Fibrosis (READY): A Pilot Randomized Controlled Trial

Status: Completed
Location: See location...
Intervention Type: Behavioral
Study Type: Interventional
Study Phase: Not Applicable

Lung transplant is an option for treating end-stage lung disease in cystic fibrosis (CF). 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. 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 CF patients once their forced expiratory volume in one second (FEV1) is <50% predicted. Considering lung transplant as a treatment option ahead of when 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. Study involvement will span 4 weeks and study procedures will involve the following: Three Zoom interview sessions (30-60 minutes each) Survey assessments Access to a research website that contains educational resources about lung transplant (goal of 4 hours of use over the 4 week study period)

Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: No

• Diagnosis of cystic fibrosis

• FEV1 less than or equal to 50% predicted (unless referred per MD recommendation)

United States
University of Washington
Time Frame
Start Date: December 6, 2021
Completion Date: November 1, 2022
Target number of participants: 52
Experimental: Intervention
Access to an investigator-designed web-based educational resource with information about lung transplant for two weeks.
Active Comparator: Control
Access to a publicly available web-based educational resource with information about transplant for two weeks.
Related Therapeutic Areas
Leads: University of Washington
Collaborators: Cystic Fibrosis Foundation, National Heart, Lung, and Blood Institute (NHLBI)

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