Exploring Caregiver Needs While Supporting People with CF Learning About Lung Transplant
University of Washington
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. 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
Description
Lung transplant is an option for treating end-stage lung disease in cystic fibrosis (CF). In the US, more CF patients with forced expiratory volume in 1 second (FEV1) less than 30% of predicted die each year than undergo lung transplant. More than half of patients who die without lung transplant were never referred for consideration. This is especially relevant for disproportionately impacted communities with limited access to lung transplant ("communities of concern"), including patients of lower socioeconomic status, minoritized race (e.g. Black, Asian), or Hispanic ethnicity. Patient prefer…
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Identified as a caregiver or loved one of an individual with CF enrolled in the Lung Transplant READY CF 2 parent RCT, or * An individual with CF enrolled in the Lung Transplant READY CF 2 parent RCT Exclusion Criteria: * 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)
Interventions
- BehavioralInvestigator-designed lung transplant education website
Caregiver participants assigned to the intervention will access the investigator-designed educational resource via their login to a secure website.
Location
- University of Washington Medical Center - MontlakeSeattle, Washington