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.

Factors associated with improved patient and graft survival beyond 1 year in pediatric liver transplantation.

With advances in surgical techniques, medical management, and more equitable allocation systems, children who receive a liver transplantation (LT) today can expect remarkable outcomes early after LT. However, beyond 1 year after transplant, attrition rates have not improved. We reviewed two separate eras (Era 1: January 1995-June 2004 vs. Era 2: July 2004-March 2018) of the Society of Pediatric Liver Transplantation registry to explore the evolution and associated factors contributing to late graft loss (LGL) and late mortality (LM). The fraction of long-term pediatric LT recipients surviving after 1 year with their first graft significantly improved (81.5% in Era 1 vs. 85.7% in Era 2; p < 0.0001). This improvement occurred despite significant changes in patient selection toward higher risk populations (p < 0.001) and without notable improvement in perioperative complications such as hepatic artery thrombosis (p = 0.24) and early posttransplant reoperation (p = 0.94) that have historically contributed to poor late-allograft outcomes. Improved outcomes were associated with changes in patient characteristics and perioperative practices, which subsequently impacted both early post-LT complications as well as other sequalae known to contribute to adverse events in long-term pediatric LT recipients. In conclusion, despite significant changes in patient selection toward higher risk populations, and without notable improvement in several perioperative complications known to contribute to poor late-allograft outcomes, significant improvements in LGL and a trend toward improvement in LM was seen in a more contemporary cohort of children receiving an LT.

Educational needs in families of pediatric liver and kidney transplant recipients: A quality improvement project.

Parents of pediatric liver and kidney transplant recipients were surveyed regarding their current education plans (eg, Individualized Education Program, 504), satisfaction with these plans, and interest in educational support from the psychosocial transplant team. Survey results indicate high rates of IEP and 504 plans, academic and related services, and accommodations among this population. The majority of parents/guardians reported satisfaction with their child's current school plan and did not report need for additional transplant team support specific to school services on the survey measure. However, other information highlights the importance for pediatric transplant teams to consider other ways to support this population's educational needs.

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.

Shear wave elastography helps differentiate biliary atresia from other neonatal/infantile liver diseases.

BACKGROUND: Biliary atresia is a rapidly progressive liver disease necessitating prompt diagnosis and surgical intervention, so it must be promptly distinguished from other neonatal/infantile liver diseases. OBJECTIVE: To determine whether US shear wave elastography (SWE) can differentiate biliary atresia from other neonatal/infantile liver diseases based on liver hardness. MATERIALS AND METHODS: Eleven children younger than 1 year who had suspected liver disease underwent anatomically and temporally-related hepatic shear wave elastography and clinically indicated percutaneous core needle biopsy. Shear wave elastography was performed immediately prior to liver biopsy at the targeted biopsy site using an Acuson S3000 US system/9L4 transducer (Siemens Medical Solutions USA, Malvern, PA). Shear wave elastography was performed using Virtual Touch Quantification (VTQ) and Virtual Touch IQ (VTIQ) modes, and six shear wave speed measurements were acquired from each subject for each mode. Children were placed in two groups based on histology, biliary atresia (n = 6) vs. non-biliary atresia (other neonatal/infantile liver diseases) (n = 5), and mean shear wave speed measurements were compared using the unpaired student's t-test (two-tailed). A P-value <0.05 was considered significant. RESULTS: Using the VTQ mode, mean liver shear wave speed was 2.08 ± 0.17 m/s for the biliary atresia group and 1.28 ± 0.13 m/s for the non-biliary atresia group (P < 0.0001). Using the VTIQ mode, mean liver shear wave speed was 3.14 ± 0.73 m/s for the biliary atresia group and 1.61 ± 0.23 m/s for the non-biliary atresia group (P = 0.003). Ishak liver fibrosis scores ranged from 3 to 6 for the biliary atresia group and from 0 to 1 for the non-biliary atresia group. CONCLUSION: Liver shear wave speed is abnormally increased in neonates and infants with biliary atresia.

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.

Variation in Alanine Aminotransferase in Children with Non-Alcoholic Fatty Liver Disease.

Background: Pediatric non-alcoholic fatty liver disease (NAFLD) is a major public health concern. Aminotransferase (ALT) is frequently used for screening and monitoring, but few studies have reported typical patterns of ALT elevation in children. Methods: TARGET-NASH is a real-world longitudinal observational cohort of patients with NAFLD receiving care across the United States. Analyses included children enrolled between 1 August 2016, and 12 October 2020, with at least one ALT measurement after enrollment. Peak ALT was based on the first and last available record and categorized into clinical cut points: <70 IU/L, >70−<250 IU/L, and >250 IU/L. A chi-squared test was used to compare differences in proportions, and a Kruskal−Wallis test was used to compare the medians and distributions of continuous responses. Results: Analyses included 660 children with a median age of 13 years. Of the 660, a total of 187 had undergone a biopsy and were more likely to be Hispanic or Latino (67% vs. 57%, p = 0.02) and to have cirrhosis (10% vs. 1%, p < 0.001). The highest ALT scores ranged from 28 U/L to 929 U/L; however, these scores varied across time. The prevalence of cirrhosis or any liver fibrosis stage was most common among children with a peak ALT > 70 U/L. Conclusions: Large variability was seen in ALT among children, including many values > 250 U/L. Higher levels of ALT were associated with increased prevalence of comorbidities and more advanced stages of NAFLD. These findings support an increased need for therapeutics and disease severity assessment in children with peak ALT > 70 U/L.