Barriers to access in pediatric living‐donor liver transplantation

Abstract

Children receiving a LDLT have superior post‐transplant outcomes, but this procedure is only used for 10% of transplant recipients. Better understanding about barriers toward LDLT and the sociodemographic characteristics that influence these underlying mechanisms would help to inform strategies to increase its use. We conducted an online, anonymous survey of parents/caregivers for children awaiting, or have received, a liver transplant regarding their knowledge and attitudes about LDLT. The survey was completed by 217 respondents. While 97% of respondents understood an individual could donate a portion of their liver, only 72% knew the steps in evaluation, and 69% understood the donor surgery was covered by the recipient's insurance. Individuals with public insurance were less likely than those with private insurance to know the steps for LDLT evaluation (44% vs 82%; P < 0.001). Respondents with public insurance were less likely to know someone that had been a living donor (44% vs 56%; P = 0.005) as were individuals without a college degree (64% vs 85%; P = 0.007). Nearly all respondents generally trusted their healthcare team. Among respondents, 82% believed they were well‐informed about LDLT but individuals with public insurance were significantly less likely to feel well‐informed (67% vs 87%; P = 0.03) and to understand how donor surgery might impact donor work/time off (44% vs 81%; P = 0.001). Substantial gaps exist in parental understanding about LDLT, including its evaluation, potential benefits, and complications. Greater emphasis on addressing these barriers, especially to individuals with fewer resources, will be helpful to expand the use of LDLT.

Wilson Disease in Children; Chelation Therapy or Liver Transplantation? A 10-Year Experience from Pakistan

“…LT also offers good short-term and long-term survival, with limited complications [ 23 ]. Studies have also highlighted better survival in children than in adults receiving living donor LT [ 24 ], as was seen in our cohort of patients.…”

Low renal transplantation rates in children with end‐stage kidney disease: A study of barriers in a low‐resource setting

“…Given the challenges associated with achieving a deceased‐donor kidney transplant, refusal to consent to organ donation presents a critical barrier to transplantation. In high resource countries, negative attitudes towards organ donation result from a lack of motivation, inadequate knowledge among patients about the donation process and concerns about risks associated with organ donation 29‐31 . Similar barriers likely exist in our setting, although data on patient attitudes in low‐resource countries are minimal.…”

Challenging the Traditional Paradigm of Supply and Demand in Pediatric Liver Transplantation Through Nondirected Living Donation: A Case Series

“…In addition, education regarding the option of LDLT may also be insufficient. (6) In our program, there were more non-White recipients of ND-LLDs compared with other graft types, highlighting the potential role of ND-LLDs in broadening organ access to minority liver transplant candidates in the pediatric population.…”