title: Transition of pediatric liver transplant recipients to adult care: patient and parent perspectives.
abstract: The need to prepare pediatric transplant recipients for the transfer to adult-centered transplant care has received increased attention. This study aimed to determine adolescent and young adult LTR and parent perceptions and attitudes about the transition process. LTR and their parents completed a survey assessing level of prior thought and interest in learning about transferring care, knowledge of the transition process, perceived importance of self-management skills, concerns about moving to the adult clinic, and responsibility for health management tasks. Responses were analyzed by age, gender, and time since transplantation. Participants included 46 LTR (mean age = 16.6 yr; range 12-21), and 31 parents. Recipients and parents reported moderate concern about transition, with leaving pediatric providers being a primary worry. LTR ≥16 yr reported greater health care responsibility and increased thought, interest, and knowledge about transition. There were significant differences between parent and LTR perceptions of health care responsibility, indicating that LTR perceive having more independence than what their parents report. Overall, results suggest that adolescent and young adult LTR and their parents perceive the importance of transitional care, but demonstrate poor knowledge of the process. There remains a need for improved transition planning for both adolescents and parents.
authors.affiliation: Department of Pediatrics, University of Michigan Health System, Ann Arbor, MI 48109-5318, USA. emfred@med.umich.edu
authors.forename: Emily M
authors.initials: EM
authors.lastname: Fredericks
authors.forename: Dawn
authors.initials: D
authors.lastname: Dore-Stites
authors.forename: M James
authors.initials: MJ
authors.lastname: Lopez
authors.forename: Andrew
authors.initials: A
authors.lastname: Well
authors.forename: Victoria
authors.initials: V
authors.lastname: Shieck
authors.forename: Gary L
authors.initials: GL
authors.lastname: Freed
authors.forename: Sally J
authors.initials: SJ
authors.lastname: Eder
authors.forename: John C
authors.initials: JC
authors.lastname: Magee
mesh_terms: D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D000293:Adolescent; D000367:Age Factors; D000704:Analysis of Variance; D002648:Child; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D016031:Liver Transplantation / Q000379:methods* / Q000523:psychology; D008297:Male; D010290:Parents / Q000523:psychology*; D005791:Patient Care / Q000592:standards / Q000639:trends; D011788:Quality of Life; D018570:Risk Assessment; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome; D055815:Young Adult