← Back to Search

Lung Transplant Education for Cystic Fibrosis

N/A

Recruiting

Led By Kathleen Ramos, MD, MS

Research Sponsored by University of Washington

Eligibility Criteria Checklist

Specific guidelines that determine who can or cannot participate in a clinical trial

Must have

Be older than 18 years old

Must not have

People who are unable to provide informed consent

Unable to read or understand English or Spanish to complete surveys or access the website (currently only available in English and Spanish)

Timeline

Screening 3 weeks

Treatment Varies

Follow Up measured at the 3-month and 6-month study visits

Awards & highlights

No Placebo-Only Group

Summary

This trial aims to understand how caregivers can better support individuals with CF considering lung transplant by providing educational resources and assessing the benefits of such support.

Who is the study for?

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.

What is being tested?

The trial tests an educational website designed to help caregivers of CF patients understand lung transplants, reduce caregiver burden, improve preparedness for discussions about transplantation, and increase knowledge about this treatment option.

What are the potential side effects?

Since this intervention involves using an educational website rather than a medical treatment, traditional side effects are not applicable. However, participants may experience emotional or psychological impacts from the information provided.

Eligibility Criteria

Exclusion Criteria

You may be eligible for the trial if you check “No” for criteria below:

Select...

I am able to understand and agree to the study's procedures and risks.

Select...

I can read and understand either English or Spanish to complete surveys.

Timeline

Screening ~ 3 weeks3 visits

Treatment ~ Varies

Follow Up ~ measured at the 3-month and 6-month study visits

Screening ~ 3 weeks

Treatment ~ Varies

Follow Up ~measured at the 3-month and 6-month study visits

This trial's timeline: 3 weeks for screening, Varies for treatment, and measured at the 3-month and 6-month study visits for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.

Primary study objectives

Brief Assessment Scale for Caregivers (BASC)

Social Support Effectiveness Questionnaire (SSE-Q)

Secondary study objectives

Confidence-weighted true false knowledge about lung transplant (14-question investigator-designed survey)

Generalized Anxiety Disorder 7-item (GAD-7) Scale

Likert-scale rating of preparedness to discuss lung transplant with their loved one (0-4)

+1 more

Other study objectives

Assessment of Brief Assessment Scale for Caregivers (BASC): among caregivers of members of communities of concern (low socioeconomic status, Hispanic ethnicity, or Black/Asian/Other race).

Assessment of Brief Assessment Scale for Caregivers (BASC): by caregiver gender

Assessment of Social Support Effectiveness Questionnaire (SSE-Q): among members of communities of concern (low socioeconomic status, Hispanic ethnicity, or Black/Asian/Other race).

+2 more