Changes over time in self-efficacy and the allocation of responsibility for health management tasks in pediatric liver transplant recipients: Targets to improve the transition process.

BACKGROUND: The process of transition to adult-based care encompasses a critical period in the life of an adolescent and young adult living with a chronic illness and one that comes with an increase in the risk of poor health outcomes. As yet, there is a dearth of empirical data to help optimize this process to ensure the best long-term outcome. METHODS: This study used a principal components analysis to determine specific constructs measured by a revised version of the transition readiness survey used in our clinic. We investigated changes in these constructs over time. We further investigated the relationship between the change in these constructs over time spent in a focused transition program with adherence. RESULTS: The primary component underlying our transition readiness survey for patients and parents represented self-efficacy. Time spent in the transition program was an independent predictor of change in self-efficacy (rho 0.299, p = .015); however, the magnitude of that change had no relationship to adherence. Change in parent-proxy self-efficacy was found to have a statistically significant relationship with tacrolimus standard deviation (rho -0.301, p = .026). There was disagreement identified between patient and parent responses on the survey. Neither change in patient nor parent reports of self-efficacy was found to have a relationship with post-transfer adherence. CONCLUSIONS: This study reaches the novel conclusion that self-efficacy and parent-proxy self-efficacy are dynamic concepts that change over time spent in a focused transition program. The patient-parent disagreement and the relationship between parent-proxy self-efficacy and adherence stress the importance of involving parents/guardians in the transition process as well.

Pediatric Liver Transplantation: Unique Concerns for the Critical Care Team.

Liver transplantation originated in children more than 50 years ago, and these youngest patients, while comprising the minority of liver transplant recipients nationwide, can have some of the best and most rewarding outcomes. The indications for liver transplantation in children are generally more diverse than those seen in adult patients. This diversity in underlying cause of disease brings with it increased complexity for all who care for these patients. Children, still being completely dependent on others for survival, also require a care team that is able and ready to work with parents and family in addition to the patient at the center of the process. In this review, we aim to discuss diagnoses of particular uniqueness or importance to pediatric liver transplantation. We also discuss the evaluation of a pediatric patient for liver transplant, the system for allocating them a new liver, and also touch on postoperative concerns that are unique to the pediatric population.

Looking Outside: Summer Camp for Children Who Have Undergone a Solid-Organ Transplant.

A high-quality critical care team is an essential component of any successful organ transplant program. From pretransplant care to the crucial postoperative period, its importance cannot be discounted. However, because of the focused nature of work in an intensive care unit (ICU), all too often members of the ICU team are not able to see and appreciate the ultimate fruits of their labor. These are factors that can contribute to the high rates of burnout and turnover among ICU teams. This article presents the concept of a summer camp for children who have received a solid-organ transplant. We discuss a vehicle by which ICU staff as well as other members of a patient's care team can gain a better appreciation of the full nature of both medical and, perhaps more importantly in this situation, nonmedical goals and outcomes in pediatric transplantation. We review our institutional experience running a summer camp for these children, discuss some of the important points in making such a camp successful, and discuss potential benefits to the campers as well as those taking care of them.

Assessing allocation of responsibility for health management in pediatric liver transplant recipients.

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.

Ultrasound shear wave speed measurements correlate with liver fibrosis in children.

BACKGROUND: Little published research has shown the relationship between noninvasive US shear wave speed (SWS) measurements and degree of liver fibrosis as established by percutaneous biopsy in children. OBJECTIVE: To assess the relationship between liver US shear wave speed (SWS) measurements and parenchymal fibrosis in children. MATERIALS AND METHODS: Sixty-two children (0-18 years old) with known or suspected liver disease underwent same-day US shear wave elastography (SWE) and clinically ordered percutaneous core needle biopsy. SWE was performed just before the liver biopsy in the area targeted for sampling, using an Acuson S3000 US system with a 9L4 transducer; six SWS measurements were acquired using Virtual Touch Quantification (VTQ) and Virtual Touch IQ (VTIQ) modes. Biopsy specimens were scored for histological fibrosis and inflammation. Bivariate relationships were assessed using Pearson correlation, while multiple linear regression analysis was used to establish the relationship between SWS and predictor variables. Receiver operating characteristic (ROC) curves were created to assess the abilities of VTQ and VTIQ to discern low vs. high liver fibrosis (histological fibrosis scores 0-2 vs. 3-6). RESULTS: There were significant positive correlations between liver histological fibrosis score and VTQ (n = 49) and VTIQ (n = 48) mean shear wave speed measurements (r = 0.68 and r = 0.73; P-values <0.0001). There also were significant positive correlations between liver histological inflammation score and VTQ and VTIQ mean shear wave speed measurements (r = 0.47 and r = 0.44, and P = 0.0006 and P = 0.0016, respectively). For VTQ, both histological fibrosis (P < 0.0001) and inflammation (P = 0.04) scores were significant predictors of shear wave speed (model adjusted R (2) = 0.49). For VTIQ, only histological fibrosis score (P < 0.0001) was a significant predictor of shear wave speed (model adjusted R (2) = 0.56). ROC areas under the curve were 0.84 and 0.86 for VTQ and VTIQ, respectively. CONCLUSION: Liver US shear wave speed measurements increase with increasing parenchymal fibrosis in children.