Objective To investigate the distribution of health related quality of life in pediatric liver transplant recipients compared to a normative population. Study design Cross-sectional, multi-center study conducted at select SPLIT centers. Patients between 2-18 years of age, surviving liver transplantation by at least 12 months were eligible. Parent/guardian fluency in English or Spanish was required. Children ≥ 8 years and parents of all children completed the age appropriate versions of the PedsQL™ 4.0. Scores were compared to a healthy children sample (n=3911) matched by age group, gender, race/ethnicity and to a sample of pediatric cancer patients receiving chemotherapy and/or radiation. Results Participants included 65% (873/1339) of eligible patients. Mean age was 8.17±4.43 years and 55% were female. The total and subscales scores of PedsQL™ 4.0 were lower than healthy children (p<0.001) with effect sizes for self-report ranging from −0.25 for Emotional Functioning to −0.68 for School Functioning. Patients and their parents reported better physical functioning than cancer patients, but similar social and school functioning. Correlations between parent and self-reports were in the moderate agreement range. Conclusion Pediatric liver transplant recipients and their parents report lower HRQOL than controls with some domains equal to children receiving cancer therapy.

This cross-sectional, multi-center cohort study compares the level of health-related quality of life (HRQOL) of pediatric liver transplant (LT) recipients to children with other chronic health conditions.Design and Methods-LT sample included 873 children who survived at least 12 months following LT. Six chronic disease samples were compiled from numerous studies, including over 800 patients with Juvenile Rheumatoid Arthritis (JRA), type 1 diabetes, cancer in remission, cardiac disease, end-stage renal disease and inflammatory bowel disease. Generic HRQOL was measured from both the parental and patient perspective using the PedsQL ™ 4.0 Generic Core Scales.Corresponding Author: Estella M. Alonso, MD, Children's Memorial Hospital, 2300 Children's Plaza, Box 65, Chicago, IL 60614 Ph: 773-975-8837 Fax: 773-975-8671 e-alonso@northwestern.edu. The data presented in this manuscript is original data, the authors had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.Competing Interests: Dr. Varni holds the copyright and the trademark for the PedsQL ™ and receives financial compensation from the Mapi Research Trust, which is a nonprofit research institute that charges distribution fees to for-profit companies that use the Pediatric Quality of Life Inventory ™ . Results-Pediatric LT patients reported better physical health than children with JRA. According to parents, pediatric LT recipients had better HRQOL than children on renal dialysis on all domains except school functioning. Across all domains but emotional functioning, pediatric LT recipients reported significantly lower HRQOL than children with type 1 diabetes. Overall, pediatric LT patients reported comparable HRQOL to children who had undergone renal transplantation and patients with cancer in remission.Conclusions-Pediatric LT patients manifested impaired HRQOL similar to children with chronic diseases and these data suggest they face ongoing challenges that warrant monitoring and indicate a need for interventions to improve their HRQOL.

Survival into adulthood for individuals with spina bifida has significantly improved over the last 40 years with the majority of patients now living as adults. Despite this growing population of adult patients who have increased medical needs compared to the general population, including spina bifida (SB)-specific care, age-related secondary disabilities, and general adult medical needs, there is little published information about the natural history of SB in adulthood. There are few published studies of medical conditions, interventions, or long-term complications in this population. This article will provide a review of the medical issues of adults with SB, highlighting areas that are different than pediatric care, and areas of needed research.

Patients with nonvalvular atrial fibrillation treated with warfarin who have psychosocial risk factors for nonadherence have an increased risk of adverse events.