Social & Contextual Impact on Children Undergoing Liver Transplantation

Recruiting

Brief Summary: The social determinants of health have a large impact on health. For example, neighborhood socioeconomic deprivation is associated with increased risk of medication non-adherence, graft failure, and death in children after liver transplant. In order to address these socioeconomic inequities in outcomes, a more granular understanding of how the social determinants of health impact outcomes is needed. In this observational prospective cohort, caregivers of children undergoing liver transplantation will complete surveys and undergo in-depth, qualitative interviews. The survey will assess comprehensively for the social determinants of health (e.g. material economic hardship, health literacy, social connectedness, primary care quality, etc). The qualitative interviews will identify barriers and facilitators that socioeconomically deprived children/families have to obtaining the ideal outcome and identify health system opportunities to integrate social needs and medical care. Data will be linked to an existing prospective cohort study (The Society for Pediatric Liver Transplant registry) to assess the impact of social risk on outcomes after transplant.

Healthcare providers who take care of children undergoing liver transplant will also be included in the qualitative interviews. The goal of including this group in the study is to determine the health systems barriers and facilitators to social needs screening and intervention.

Recruitment & Eligibility

Inclusion Criteria

Caregivers/parents of children with the following criteria will be approached for inclusion in this study:

Children <18 years of age at the time of transplant
Undergoing liver transplantation
Guardian's consent, child assent (in accordance with each institution's IRB policies)
Consents to enrollment in SPLIT

Exclusion Criteria

Caregivers/parents of children undergoing liver transplantation will be excluded it:

Caregiver unwilling or unable to complete the survey
Child is a ward of the state (e.g., foster care) since present circumstances may not be reflective of child's past or future circumstances
Non-English, non-Spanish speakers
Non-US residents
Declined participation in SPLIT

Inclusion Criteria for Interview Portion of the Study:

Participants who have completed the questionnaire OR
Medical team member involved in the care of children undergoing liver transplant (e.g., physician, nurse, social worker)

Primary Outcome Measures

Name	Time	Method
Number of days hospitalized within 90 days after transplant, including the initial transplant hospitalization	90 Days
Ideal Outcome-3 (IO-3)	3 Years	The ideal outcome measure is a composite measure of morbidity after transplant defined as alive, ALT and GGT \<50, normal GFR, no non-liver transplants, no cytopenias, and no PTLD.
Episodes of acute cellular rejection	1 Year

Secondary Outcome Measures

Name	Time	Method
Readmission within 90 days after transplant	90 Days
Episode of re-transplantation	3 Years
Episode of biopsy-proven acute cellular rejection within 90 days after transplant	90 Days

Locations (8): Cincinnati Children's Hospital Medical Center
🇺🇸
Cincinnati, Ohio, United States
Children's Hospital Los Angeles
🇺🇸
Los Angeles, California, United States
Children's Healthcare of Atlanta
🇺🇸
Atlanta, Georgia, United States
Lucile Packard Children's Hospital
🇺🇸
Palo Alto, California, United States
University of California San Francisco
🇺🇸
San Francisco, California, United States
UPMC Children's Hospital of Pittsburgh
🇺🇸
Pittsburgh, Pennsylvania, United States
Children's Medical Center Dallas
🇺🇸
Dallas, Texas, United States
Seattle Children's Hospital
🇺🇸
Seattle, Washington, United States