Liver cirrhosis affects over 4 million adults; it is associated with significant morbidity and is the eighth-leading cause of death in the United States. Many cirrhotic patients die prematurely because they—and often their physicians—do not have the necessary information to guide their care, and therefore do not receive the best available treatment. National comparative effectiveness data are lacking about which treatments (e.g., cirrhotic liver cancer treatments, transplant timing) provide the longest life and best quality of life for an individual patient.
Tier I funding supported the development of a tiered infrastructure of stakeholders that included cirrhotic patients, caregivers, and next of kin from across the country, along with the National American Liver Foundation, transplant surgeons, hepatologists, social workers, transplant nurses, primary care physicians, and healthcare outcomes researchers. We solicited ideas for development of comparative effective research (CER) of greatest importance to stakeholders. Our goals for the Tier II project are as follows:
- Mature relationships developed during Tier I and continue to expand on building new relationships with stakeholders nationally.
- Create a communication plan for project and research outcomes.
- Finalize the governance structure developed in Tier I.
- Solicit and discuss additional CER questions and determine the final CER question to be studied.
The final result of this work will be the development of viable CER questions for the submission of a full PCORI application.