Can transition to adult care for transplant recipients be improved by intensified services while patients are still in pediatrics?

Context-Transferring out of pediatrics is a vulnerable time for transplant recipients. Use of a transition coordinator before and after transfer improves outcomes, although it is unclear whether placing a transition coordinator in pediatrics alone is beneficial. Objective-To determine if incorporating a transition coordinator in pediatrics only is associated with stable outcomes for kidney transplant recipients. Design-A retrospective chart review was conducted on outcomes for kidney transplant recipients who shifted service location between 2008 and 2012. Setting-A pediatric and adult transplant unit. Patients-Twenty-two patients transferred during the study period. Intervention-Twelve patients received more intensified preparation from the team's social worker, whose role was aligned with a transition coordinator position; 10 patients received standard care. Main Outcome Measures-The primary outcome was medication adherence, using a validated measure, standard deviations of tacrolimus blood levels. A standard deviation greater than 2.5 has been established as a threshold associated with poor outcomes such as rejection. Standard deviation of tacrolimus levels was compared for 1 year before and 1 year after transfer. Results-Medication adherence worsened from 1 year before (2.03 [SD, 0.75]) to 1 year after transfer (2.95 [SD, 1.38]; t = -;3.07, P = .007). A repeated-measures analysis of variance indicated that this pattern was the same for patients who did and patients who did not receive intensified services in pediatrics (F1,16 = 1.07, P = .32).

Strategies for measuring quality of life among pediatric solid-organ transplant recipients.

OBJECTIVE: Quality of life (QoL) has become a mainstay in the outcome assessment of pediatric solid-organ transplant recipients. Yet, how QoL is operationalized and measured varies drastically. It may be very difficult for clinicians and researchers to determine which methods of QoL assessment best meet the needs of their patients or study. The purpose of this literature review is to describe and evaluate the current status of QoL measurement in studies of pediatric solid-organ transplant recipients. DATA SOURCES: Searches of PubMed and PsycINFO from January 1985 to February 2012. STUDY SELECTION: English peer-reviewed publications that described a method for measuring QoL whether it was a standardized questionnaire, qualitative approach, or another way of operationalizing the construct. DATA EXTRACTION: QoL measurement strategies were extracted from 43 studies that met inclusion criteria. DATA SYNTHESIS: Each article was reviewed and summarized by 2 study team members. CONCLUSIONS: Many different strategies were used for measurement, and some were not consistent with established conceptualizations of QoL. Overall recommendations for best practices are offered. Detailed information about specific measures is included, and measures that seem to capture the construct well are recommended. Additionally, our review highlighted the importance of using a "battery approach," including child and parent report as well as considering other variables, such as patient's age, when selecting a QoL measurement strategy.

Liver transplantation for children with biliary atresia in the pediatric end-stage liver disease era: the role of insurance status.

Socioeconomic status influences health outcomes, although its impact on liver transplantation (LT) in children with biliary atresia (BA) is unknown. We hypothesized that governmental insurance [public insurance (PU)], rather than private insurance (PR), would be associated with poorer outcomes for children with BA. Children with BA who underwent first isolated LT between January 2003 and June 2011 were identified from United Network for Organ Sharing Standard Transplant Analysis and Research files. We identified 757 patients with PR and 761 patients with PU. The race/ethnicity distribution was significantly different between the groups (65% white, 12% black, and 10% Hispanic in the PR group and 33% white, 26% black, and 29% Hispanic in the PU group, P < 0.01). Wait-list mortality was higher for the PU group versus the PR group [46/1654 (2.7%) versus 29/1895 (1.5%), P < 0.01]. PR patients were older than PU patients at transplant (2.4 ± 4.5 versus 1.5 ± 3.0 years, P < 0.01). The donor types differed between the groups: 165 children (21.8%) in the PR group received living donor grafts, whereas 79 children (10.4%) in the PU group did (P < 0.01). The 1- and 5-year posttransplant patient survival rates were greater for the PR group versus the PU group (98.0% versus 94.1% at 1 year, P < 0.01; 97.8% versus 92.2% at 5 years, P < 0.01). Cox proportional hazards models revealed that the insurance type (PU), the donor type (deceased), and life support were significant risk factors for death. A separate analysis of deceased donor LT revealed that the PU group still had significantly worse patient and graft survival. In conclusion, PU coverage is an independent risk factor for significantly increased wait-list and posttransplant mortality in children with BA. Further studies are needed to unearth the reasons for these important differences in outcomes.