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

详细信息    查看全文

• 作者：Adriaan R.E. Potgieser^a ; Willemien de Vries ; M.D. ; Ph.D.^b ; Yuk K. Sze ; M.D.^c ; Egbert Sieders ; M.D. ; Ph.D.^c ; Henkjan J. Verkade ; M.D. ; Ph.D.^b ; Robert J. Porte ; M.D. ; Ph.D.^c ; Josette E.H.M. Hoekstra-Weebers ; M.A. ; Ph.D.^d ; Jan B.F. Hulscher ; M.D. ; Ph.D.^a ; ^{j.b.f.hulscher@chir.umcg.nl} ; NeSBAR
• 关键词：Adolescence ; Biliary atresia ; Childhood ; Chronic illness ; Course of life ; Pediatrics ; Pediatric liver transplantation ; Social adjustment
• 刊名：Journal of Adolescent Health
• 出版年：2012
• 出版时间：June, 2012
• 年：2012
• 卷：50
• 期：6
• 页码：641-644
• 全文大小：355 K

文摘

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.