Preparation for Lung Transplant Discussions and Decisions Among People With Cystic Fibrosis

Status: Recruiting
Location: See all (11) locations...
Intervention Type: Behavioral
Study Type: Interventional
Study Phase: Not Applicable
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: * Four Zoom research sessions (15-30 minutes each) * Survey assessments * Access to a research website that contains educational resources about lung transplant * Audio recording of a routine CF clinic visit to determine if and how lung transplant is discussed between a participant and his/her/their CF doctor

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: f
View:

• Diagnosis of cystic fibrosis

• FEV1 less than 50% of predicted

Locations
United States
California
University of California at Los Angeles (UCLA)
RECRUITING
Los Angeles
Colorado
National Jewish Health
RECRUITING
Denver
Connecticut
Yale University
RECRUITING
New Haven
Kansas
University of Kansas
RECRUITING
Kansas City
Maryland
Johns Hopkins University
RECRUITING
Baltimore
Maine
Maine Health
RECRUITING
Portland
Minnesota
University of Minnesota
RECRUITING
Minneapolis
Ohio
University of Cincinnati
RECRUITING
Cincinnati
Pennsylvania
University of Pittsburgh
RECRUITING
Pittsburgh
Texas
Baylor College of Medicine
RECRUITING
Houston
Washington
University of Washington Medical Center - Montlake
RECRUITING
Seattle
Contact Information
Primary
Lauren Bartlett, BS, CCRC
lrejman@uw.edu
503-583-2869
Time Frame
Start Date: 2023-09-06
Estimated Completion Date: 2027-07-31
Participants
Target number of participants: 132
Treatments
Experimental: Intervention
Access to an investigator-designed web-based educational resource with information about lung transplant for three months.
Active_comparator: Attention-control
Access to a publicly available web-based educational resource with information about transplant for three months.
Related Therapeutic Areas
Sponsors
Collaborators: National Institute of Nursing Research (NINR)
Leads: University of Washington

This content was sourced from clinicaltrials.gov