A Research Study on the Current Status of Biliary Atresia Cases in Adults and Status of Public Subsidies

Abstract

Purpose: Long-term survivors of biliary atresia were studied to compare native liver survival and liver transplantation cases and analyze problems of the public subsidy system.

Methods: A questionnaire was administered to 451 adults in the Family Association and 179 responded. Age, gender, presence of liver transplantation, jaundice and correlated symptoms, outpatient/hospitalization status, severity, and receipt of public subsidy were determined in native liver (N) and liver transplantation (L) groups.

Results: There were 60 women and 32 men aged from 20 to 46 years in the N group and 56 women and 31 men aged from 20 to 49 years in the L group (p = 0.13).

Jaundice and correlated symptoms were found in 31 (33.7%) and 35 patients (40.2%) (p = 0.63) in the N and L groups, respectively. The numbers of outpatients were 76 (82.6%) and 86 (98.9%) (p < 0.05), and those of patients not hospitalized for a year were 70 (76.1%) and 61 (70.1%) (p = 0.51) in the N and L groups, respectively. The numbers of patients who received public subsidy were 1 (1.8%) and 35 (77.85%) among those with mild severity (p < 0.05), 6 (21.4%) and 30 (96.8%) among those with a severity score of 1 (p < 0.05), and 6 (75%) and 4 (100%) among those with severity scores of 2 and 3 (p = 0.27) in the N and L groups, respectively.

Conclusions: More than 30% of patients had symptoms regardless of liver transplantation. Public subsidies were provided more to group L than to group N. This disease requires management throughout the patient’s life; hence, comprehensive measures such as improving and optimizing the public subsidy system are necessary.