Lung Transplant Education for Cystic Fibrosis
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial aims to determine if an educational website can help caregivers of people with cystic fibrosis (CF) better understand and discuss lung transplants. Lung transplants can be life-saving for those with severe lung disease from CF, but many aren't referred or choose not to pursue this option. The study will compare caregivers who use the investigator-designed lung transplant education website with those who don't, assessing whether it reduces stress and improves preparedness and knowledge. It suits caregivers of individuals with CF enrolled in a related study who can read English or Spanish. Participants will engage in three Zoom sessions, complete surveys, and possibly participate in an interview over six months. As an unphased trial, this study offers caregivers a unique opportunity to contribute to research that could enhance support and resources for others in similar situations.
Will I have to stop taking my current medications?
The trial information does not specify whether participants need to stop taking their current medications.
What prior data suggests that this lung transplant education website is safe for caregivers?
Research has shown that people with cystic fibrosis (CF) who have had lung transplants often feel much healthier and happier, indicating the procedure's effectiveness for many. However, this study does not test a new drug or surgery. Instead, it focuses on an educational website designed to help caregivers learn more about lung transplants.
Since this study involves sharing information rather than providing medical treatment, it does not carry the same safety concerns as trials for new drugs or surgeries. The website aims to reduce caregiver stress and offer better support for those considering a lung transplant, making it a safer option compared to other medical trials.12345Why are researchers excited about this trial?
Researchers are excited about this trial because it explores a new way to empower patients with cystic fibrosis who might need a lung transplant. Unlike standard treatments that focus on medical procedures and medications, this trial tests an educational approach using a web-based resource specifically designed to inform patients about lung transplants. This method could enhance patient understanding and engagement, potentially improving their preparation and decision-making regarding transplants. By focusing on education, the trial aims to address the gap in patient knowledge and support, which is not typically covered by existing medical treatments.
What evidence suggests that this lung transplant education website is effective for reducing caregiver burden in cystic fibrosis?
This trial will compare the effects of providing access to an investigator-designed lung transplant education website with not providing access. Research has shown that good education about lung transplants helps patients make informed choices and leads to better outcomes after the transplant. Personal stories from people with cystic fibrosis (CF) who have had lung transplants help about 74% of others understand and make decisions. Lung transplants can extend life and improve quality of life, but many CF patients with severe lung disease die before receiving a transplant. Educational resources are designed to help caregivers discuss and decide on lung transplants. By raising awareness and providing support, these resources aim to reduce the number of CF patients who die without receiving a lung transplant.15678
Who Is on the Research Team?
Kathleen Ramos, MD, MS
Principal Investigator
University of Washington
Are You a Good Fit for This Trial?
This trial is for caregivers or loved ones of individuals with cystic fibrosis (CF) who are enrolled in a related lung transplant study. Participants must be able to give informed consent and understand English or Spanish to complete surveys and use the educational website.Inclusion Criteria
Exclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Baseline Assessment
Caregiver participants take baseline surveys within 3 months of their loved one's enrollment in the parent Lung Transplant READY CF 2 RCT.
Intervention
Caregivers are randomly assigned to access the investigator-designed website or have no website access for the next three months. Surveys evaluate knowledge about lung transplant, preparedness for discussions, mental health, and caregiver burden.
Follow-up
Participants are monitored for changes in caregiver burden and social support effectiveness. Final surveys are completed, and caregivers gain access to the website.
Long-term Follow-up
Web analytics are captured to determine caregivers' usage patterns for the research website. Caregivers may be invited to participate in an interview.
What Are the Treatments Tested in This Trial?
Interventions
- Investigator-designed lung transplant education website
Find a Clinic Near You
Who Is Running the Clinical Trial?
University of Washington
Lead Sponsor
Cystic Fibrosis Foundation
Collaborator