Grant: Project Grant

Caregivers play an essential role in the care of patients with chronic liver disease. Online caregiver wellness programs have improved caregiver outcomes, including less anxiety, depression, caregiver burden, and increased quality of life, but the evidence in caregivers of patients with chronic liver disease is limited. With a strong background in online wellness interventions and patient-oriented research, our team has partnered with chronic liver disease patient and caregiver organizations to design a program (CarEL) to support caregivers and assess it in a high-quality randomized controlled trial. CarEL is a 12-week online caregiver wellness program with modules of caregiver self-care, disease education, and resources developed by psychologists, social work and palliative care experts. When the project starts, our caregiver advisors will make any final suggestions to refine the CarEL program. Then we will carry out a multicenter randomized controlled trial in 326 caregivers of individuals with primary sclerosing cholangitis, cirrhosis or liver cancer. The primary outcome will be change in anxiety and depression measured at study weeks 0 and 12. Secondary outcomes will evaluate changes in caregiver quality of life, caregiver burden, and caregiver strain. All caregivers will be mailed a Fitbit activity tracker to measure sleep quantity and quality. The knowledge gained from the study will be shared across multiple avenues including spread by our partner organizations, publications in peer reviewed journals, presentations at patient conferences and medical conferences, news stories and social media. As the largest study of caregivers in chronic liver disease, CarEL holds promise to positively impact the health and wellbeing of these individuals, and build much needed evidence to advocate for policy change. We anticipate that study results will also have many learnings that can be applied to additional caregiver populations.