title: Course of life into adulthood of patients with biliary atresia: the achievement of developmental milestones in a nationwide cohort.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Pediatric Surgery, Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
authors.forename: Adriaan R E
authors.initials: AR
authors.lastname: Potgieser
authors.forename: Willemien
authors.initials: W
authors.lastname: de Vries
authors.forename: Yuk K
authors.initials: YK
authors.lastname: Sze
authors.forename: Egbert
authors.initials: E
authors.lastname: Sieders
authors.forename: Henkjan J
authors.initials: HJ
authors.lastname: Verkade
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Porte
authors.forename: Josette E H M
authors.initials: JE
authors.lastname: Hoekstra-Weebers
authors.forename: Jan B F
authors.initials: JB
authors.lastname: Hulscher
authors.forename: D C
authors.initials: DC
authors.lastname: Aronson
authors.forename: G
authors.initials: G
authors.lastname: Damen
authors.forename: J H
authors.initials: JH
authors.lastname: Escher
authors.forename: L W E
authors.initials: LW
authors.lastname: van Heurn
authors.forename: R H J
authors.initials: RH
authors.lastname: Houwen
authors.forename: H A
authors.initials: HA
authors.lastname: Heij
authors.forename: J B F
authors.initials: JB
authors.lastname: Hulscher
authors.forename: C M F
authors.initials: CM
authors.lastname: Kneepkens
authors.forename: B G
authors.initials: BG
authors.lastname: Koot
authors.forename: Z J
authors.initials: ZJ
authors.lastname: de Langen
authors.forename: G
authors.initials: G
authors.lastname: Madern
authors.forename: A M
authors.initials: AM
authors.lastname: van den Neucker
authors.forename: P M J G
authors.initials: PM
authors.lastname: Peeters
authors.forename: H J
authors.initials: HJ
authors.lastname: Verkade
authors.forename: W
authors.initials: W
authors.lastname: de Vries
authors.forename: D C
authors.initials: DC
authors.lastname: van der Zee
mesh_terms: D000328:Adult; D000987:Antisocial Personality Disorder / Q000453:epidemiology / Q000523:psychology; D001656:Biliary Atresia / Q000453:epidemiology* / Q000523:psychology* / Q000601:surgery; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D002658:Developmental Disabilities / Q000453:epidemiology* / Q000523:psychology*; D005260:Female; D005715:Gambling / Q000453:epidemiology / Q000523:psychology; D006801:Humans; D057187:Independent Living / Q000523:psychology; D016031:Liver Transplantation; D008297:Male; D009426:Netherlands; D011171:Portoenterostomy, Hepatic; D020018:Sexual Dysfunctions, Psychological / Q000453:epidemiology / Q000523:psychology; D012917:Social Adjustment; D019966:Substance-Related Disorders / Q000453:epidemiology / Q000523:psychology; D011795:Surveys and Questionnaires; D055815:Young Adult