At the Pediatric Liver Center of Excellence at UCSF Benioff Children’s Hospitals, we aim to optimize outcomes for all children with liver disorders. To discover how socio-economic factors impact young patients undergoing liver transplantation and whether a health advocate can improve outcomes, pediatric gastroenterologist and hepatologist Sharad I. Wadhwani, MD, MPH, is leading two clinical studies: the SOCIAL-Tx study and the HEAL-Tx pilot.
Q: What is the purpose of the SOCIAL-Tx study?
A: The Social & Contextual Impact on Children Undergoing Liver Transplantation (SOCIAL-Tx) study is designed to discover barriers that socio-economically deprived children and families face in attaining the best possible outcomes after liver transplant.
Factors such as food insecurity and housing instability are associated with poor outcomes, including acute rejection within the first year of liver transplantation. Parents of young patients undergoing transplantation may risk losing their jobs due to caretaking requirements. They may also face financial stressors such as hospital parking, cafeteria meals and childcare for other siblings. All of these factors can compound stress on families and impact patients undergoing transplantation.
Established in 2020, the SOCIAL-Tx study is dedicated to understanding the lived experiences of children and their families as they undergo liver transplantation. Through surveys and qualitative interviews, the research team seeks to improve transplant care for these children by understanding:
- How specific social determinants of health (aspects of where a child lives, learns, grows and plays) impact outcomes for children after liver transplant
- How transplant teams could improve care to mitigate and/or address these social determinants to improve outcomes
Health care providers who care for children undergoing liver transplantation are also included in the qualitative interviews. The goal of including this group in the study is to identify barriers that transplant teams encounter in addressing social determinants of health.
This study is currently being conducted at nine U.S.-based sites and has been continuously funded through research support from the National Institutes of Health (NIH), American Association for the Study of Liver Disease (AASLD), American Gastroenterological Association (AGA) and the UCSF Academic Senate.
Q: How are the SOCIAL-Tx and HEAL-Tx studies related?
A: The SOCIAL-Tx study led to the Health Advocate for Liver Transplant (HEAL-Tx) pilot. From health care provider interviews, we recognized that transplant team members can quickly become overwhelmed by the many referrals for assistance and often rely on social workers instead. Recognizing the need for a resource similar to a health advocate, a model that has shown positive results with oncology patients, we established the HEAL-Tx pilot.
Q: What is the purpose of the HEAL-Tx pilot?
A: The HEAL-Tx pilot study was designed to evaluate the feasibility of integrating a health advocate as part of the transplant team at UCSF Benioff Children’s Hospitals and whether this integration would help improve outcomes for our patients. Health advocates can help in coordinating care, accessing financial assistance and pursuing community resources to improve communication, mitigate social risks and support self-advocacy among families and caregivers of patients undergoing transplantation. These health care workers, without a medical degree, can help a child’s family address some of life’s challenges so they can focus on taking care of their child.
It’s a small study, with an expected 10 participants, located at UCSF Benioff Children’s Hospitals. So far, we have received positive feedback. Our health advocate has helped families in navigating the health system, finding free legal aid, completing Supplemental Nutrition Assistance Program (SNAP) applications, locating food pantries and researching housing solutions. We plan to expand this study to five U.S.-based pediatric liver transplant centers.
To learn more about Dr. Wadhwani’s research and the ongoing studies, visit his lab’s website.
Refer a patient to the SOCIAL-Tx study.
