Lung Transplant Education for Cystic Fibrosis
Trial Summary
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 data supports the effectiveness of the treatment Lung Transplant Education Website for cystic fibrosis patients?
Research shows that educational tools like e-learning programs can improve patients' knowledge about post-transplant care, which is crucial for better outcomes. Additionally, patients found home-based video education informative and helpful, suggesting that online educational resources can be effective in preparing patients for lung transplants.12345
Is the Lung Transplant Education Website safe for humans?
How does the Lung Transplant Education for Cystic Fibrosis treatment differ from other treatments for this condition?
This treatment is unique because it focuses on educating patients about the lung transplant process through home-based video series, which helps them understand and navigate the transplant journey better. Unlike traditional treatments that focus on medical interventions, this approach emphasizes patient education and preparation, making it a novel addition to the standard care for cystic fibrosis patients awaiting lung transplants.24111213
What is the purpose of this trial?
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.Patients' health discussion networks function to support individuals in health related matters and may provide critical support during the lung transplant journey. Increasing awareness of lung transplant, and promoting the process of deliberation and utilization of social support, could reduce the number of people with CF who die without lung transplant. Additionally, the most common patient-endorsed barrier to lung transplant discussions is a worry about being a burden on family and friends after lung transplant. For lung transplant recipients with complex post-operative courses, low social support is associated with increased mortality. Additionally, adequate social support is a requirement at all lung transplant programs in the US.Investigators are interested in understanding how caregivers may benefit from using lung transplant educational resources and how caregivers prepare for having discussions with their loved ones and/or helping them make decisions about lung transplant as a treatment option for advanced CF. The purpose of this study is to test whether an investigator-designed research website compared to no caregiver intervention reduces caregiver burden (assessed with the Brief Assessment Scale for Caregivers, BASC), caregiver preparedness for lung transplant discussions, and caregiver lung transplant knowledge as an ancillary study in a multicenter RCT. Further, investigators will assess patient perceptions of caregiver support as measured by the Social Support Effectiveness Questionnaire (SSE-Q) and evaluate caregivers' willingness to provide support through semi-structured interviews in patient-caregiver dyads.Study involvement will span 6 months and study activities will involve the following:* Three Zoom research sessions (15-90 minutes each)* Survey assessments and an interview* Access to a research website that contains educational resources about lung transplant
Research Team
Kathleen Ramos, MD, MS
Principal Investigator
University of Washington
Eligibility Criteria
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
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.
Treatment Details
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