Course of Life Into Adulthood of Patients With Biliary Atresia: The Achievement of Developmental Milestones in a Nationwide Cohort

• Published in: Journal of adolescent health 2012-06, Vol.50 (6), p.641-644
• Main Authors: Potgieser, Adriaan R.E, de Vries, Willemien, M.D., Ph.D, Sze, Yuk K., M.D, Sieders, Egbert, M.D., Ph.D, Verkade, Henkjan J., M.D., Ph.D, Porte, Robert J., M.D., Ph.D, Hoekstra-Weebers, Josette E.H.M., M.A., Ph.D, Hulscher, Jan B.F., M.D., Ph.D
• Format: Article
• Language: English
• Subjects: Adolescence; Adult; Adult and adolescent clinical studies; Antisocial Personality Disorder - epidemiology; Antisocial Personality Disorder - psychology; Biliary atresia; Biliary Atresia - epidemiology; Biliary Atresia - psychology; Biliary Atresia - surgery; Biological and medical sciences; Childhood; Chronic illness; Cohort Studies; Course of life; Cross-Sectional Studies; Delayed; Developmental Disabilities - epidemiology; Developmental Disabilities - psychology; Female; Gambling - epidemiology; Gambling - psychology; Gastroenterology. Liver. Pancreas. Abdomen; Humans; Independent Living - psychology; Infancy; Liver Transplantation; Liver. Biliary tract. Portal circulation. Exocrine pancreas; Male; Medical sciences; Netherlands; Other diseases. Semiology; Pediatric liver transplantation; Pediatrics; Portoenterostomy, Hepatic; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Reference groups; Sexual Dysfunctions, Psychological - epidemiology; Sexual Dysfunctions, Psychological - psychology; Social Adjustment; Social behavior disorders. Criminal behavior. Delinquency; Social development; Substance abuse; Substance-Related Disorders - epidemiology; Substance-Related Disorders - psychology; Surveys and Questionnaires; Survivors; Young Adult
• ISSN: 1054-139X; 1879-1972
• DOI: 10.1016/j.jadohealth.2011.10.007

Abstract Purpose To investigate the course of life of young adults diagnosed with biliary atresia (BA) in infancy by comparing patients who did and did not underwent transplantation with an age-matched Dutch reference group. Methods All patients from the Dutch BA registry, aged >18 years, were invited to complete the course of life questionnaire. Results Forty patients participated (response = 74%). Twenty-five had not undergone transplantation; 15 had undergone orthotopic liver transplantation. One significant between-group difference was found, namely in substance use and gambling. BA patients who underwent transplantation reported less use than the reference group ( p = .01, moderate effect size). Additional moderate effect sizes were found for differences in psychosexual and social development and antisocial behavior. Patients who underwent transplantation had lower scores than one or both other groups. Conclusions Development of BA survivors who did not undergo transplantation seems not delayed, whereas that of transplanted patients does seem somewhat delayed. However, patients who underwent transplantation display less risk behavior. Larger samples are necessary to confirm these findings.