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.

Keywords: adolescent; liver transplantation; pediatrics; self-care; transition to adult care.

© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Figures

Figure 1

Distribution of participant ages as well as the availability of parent / guardian data. In all, 48 patients met our inclusion criteria. 37 of those patients also had data available from a parent or guardian, and the majority of those without parent data were the older patients. Mean age at the time of survey completion was 15.8 years with a range from 11.3 – 20.1.

Figure 2

The relationship between adherence and parent-reported AoR for communication and self-management tasks varies based on the stage of transition. Patients in early or middle transition whose parents perceived them as more responsible for communication tasks were at higher risk for nonadherence. Patients in middle or late transition whose parents perceived them as more responsible for self-management task were at a decreased risk of nonadherence.