title: Assessing allocation of responsibility for health management in pediatric liver transplant recipients.
abstract: Given the increased risk for non-adherence and poor health outcomes in late adolescence, there is a need for better methods to evaluate and improve the transition process as adolescent patients are prepared to be independent adults. This study assessed the psychometrics and concurrent validity of a newly developed measure of AoR for health management in pediatric liver transplant patients. A total of 48 patients and 37 parents completed a 13-item measure of AoR. We performed an exploratory PCA on survey results and used component scores to assess the relationship between AoR and age, age at transplant, adherence, and health outcomes. Two primary components were identified: communication with the healthcare system and self-management tasks. Parent perception of adolescent responsibility for tasks related to communicating with the healthcare system was correlated, in younger patients, with increased non-adherence while responsibility for tasks related to self-management was correlated, in older patients, with decreased non-adherence. These results support AoR as a two-domain construct, and they provide targets for monitoring and intervention as adolescent patients advance toward transfer.
authors.affiliation: Department of Pediatrics, University of Michigan Health System, Ann Arbor, MI, USA.
authors.forename: Jacob L
authors.initials: JL
authors.lastname: Bilhartz
authors.affiliation: Department of Pediatrics, University of Michigan Health System, Ann Arbor, MI, USA.
authors.forename: M James
authors.initials: MJ
authors.lastname: Lopez
authors.affiliation: Department of Surgery, University of Michigan Health System, Ann Arbor, MI, USA.|Transplant Center, University of Michigan Health System, Ann Arbor, MI, USA.
authors.forename: John C
authors.initials: JC
authors.lastname: Magee
authors.affiliation: Transplant Center, University of Michigan Health System, Ann Arbor, MI, USA.
authors.forename: Victoria L
authors.initials: VL
authors.lastname: Shieck
authors.affiliation: Department of Pediatrics, University of Michigan Health System, Ann Arbor, MI, USA.
authors.forename: Sally J
authors.initials: SJ
authors.lastname: Eder
authors.affiliation: Department of Pediatrics, University of Michigan Health System, Ann Arbor, MI, USA.|Child Health Evaluation and Research (CHEAR) Unit, University of Michigan Health System, Ann Arbor, MI, USA.
authors.forename: Emily M
authors.initials: EM
authors.lastname: Fredericks
mesh_terms: D000293:Adolescent; D002648:Child; D003142:Communication; D005260:Female; D006801:Humans; D007166:Immunosuppressive Agents / Q000627:therapeutic use; D016031:Liver Transplantation; D008297:Male; D010349:Patient Compliance; D011369:Professional-Patient Relations; D011594:Psychometrics; D058996:Quality Improvement; D012648:Self Care; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care; D066027:Transplant Recipients; D016896:Treatment Outcome
chemical_list: D007166:Immunosuppressive Agents
keywords: adolescent; liver transplantation; pediatrics; self-care; transition to adult care
references.citation: J Asthma. 2000 Feb;37(1):89-99
references.pmid: 10724302
references.citation: Pediatr Nurs. 2000 Jul-Aug;26(4):354-63
references.pmid: 12026469
references.citation: Pediatrics. 2004 Apr;113(4):825-32
references.pmid: 15060234
references.citation: Liver Transpl. 2005 Jan;11(1):51-60; discussion 7-9
references.pmid: 15690536
references.citation: Pediatr Transplant. 2005 Jun;9(3):364-72
references.pmid: 15910395
references.citation: Med J Aust. 2005 Oct 17;183(8):405-9
references.pmid: 16225444
references.citation: J Adolesc Health. 2006 Sep;39(3):305-17
references.pmid: 16919791
references.citation: Prog Transplant. 2006 Dec;16(4):291-302
references.pmid: 17183935
references.citation: Pediatr Infect Dis J. 2007 Jan;26(1):61-7
references.pmid: 17195708
references.citation: Pediatr Transplant. 2007 Sep;11(6):608-14
references.pmid: 17663682
references.citation: Pediatr Transplant. 2008 Feb;12(1):67-72
references.pmid: 18186891
references.citation: Pediatr Transplant. 2008 May;12(3):284-8
references.pmid: 18331387
references.citation: Am J Transplant. 2008 Nov;8(11):2230-42
references.pmid: 18822088
references.citation: J Pediatr Psychol. 2011 Mar;36(2):160-71
references.pmid: 20040605
references.citation: Pediatr Transplant. 2010 Dec;14(8):944-53
references.pmid: 20598086
references.citation: Pediatr Transplant. 2010 Dec;14(8):993-9
references.pmid: 21108707
references.citation: Pediatr Transplant. 2011 Jun;15(4):414-24
references.pmid: 21521433
references.citation: Pediatr Transplant. 2011 Dec;15(8):819-26
references.pmid: 21967601
references.citation: J Pediatr Psychol. 1990 Aug;15(4):477-92
references.pmid: 2258796
references.citation: Nurs Clin North Am. 2013 Jun;48(2):319-28
references.pmid: 23659816
references.citation: Clinics (Sao Paulo). 2014;69 Suppl 1:28-38
references.pmid: 24860856
references.citation: Liver Transpl. 2014 Oct;20(10):1168-77
references.pmid: 24931127
references.citation: Multivariate Behav Res. 1966 Apr 1;1(2):245-76
references.pmid: 26828106
references.citation: Psychol Bull. 1988 Mar;103(2):265-275
references.pmid: 3363047
references.citation: J Adolesc Health. 1993 Nov;14(7):570-6
references.pmid: 8312295
references.citation: J Paediatr Child Health. 1997 Apr;33(2):88-90
references.pmid: 9145346
references.citation: Ann Surg. 1998 Feb;227(2):289-95
references.pmid: 9488529