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.

Discrepancies in Race and Ethnicity in the Electronic Health Record Compared to Self-report.

Objective: Racial and ethnic disparities are commonplace in health care. Research often relies on sociodemographic information recorded in the electronic health record (EHR). Little evidence is available about the accuracy of EHR-recorded sociodemographic information, and none in pediatrics.

Quantification of Mucosal Activity from Colonoscopy Reports via the Simplified Endoscopic Mucosal Assessment for Crohn's Disease.

Background: Endoscopic mucosal healing is the gold standard for evaluating Crohn's disease (CD) treatment efficacy. Standard endoscopic indices are not routinely used in clinical practice, limiting the quality of retrospective research. A method for retrospectively quantifying mucosal activity from documentation is needed.

Reduced Systemic Corticosteroid Use among Pediatric Patients With Inflammatory Bowel Disease in a Large Learning Health System.

Objectives: Corticosteroids have long been used to treat inflammatory bowel disease. However, cumulative corticosteroid exposure is associated with adverse effects, particularly in growing children. Professional guidelines recommend steroid-sparing strategies.

Development and Testing of a New Simplified Endoscopic Mucosal Assessment for Crohn's Disease: The SEMA-CD.

Objectives: Endoscopic mucosal improvement is the gold standard for assessing treatment efficacy in clinical trials of Crohn's disease. Current endoscopic indices are not routinely used in clinical practice. The lack of endoscopic information in large clinical registries limits their use for research.

Identifying perianal fistula complications in pediatric patients with Crohn's disease using administrative claims.

Background: Although perianal fistulas occur commonly in pediatric Crohn's disease (CD), evaluations of health services have been limited since no validated claims-based methods exist for identifying cases.

Objective: To develop and validate accurate case definitions for perianal fistulas among pediatric patients with CD from administrative claims.

Methods: Retrospective cohort study in which we developed and tested candidate case definitions for perianal fistula.

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.

Research priorities of people living with Turner syndrome.

Despite major discoveries, traditional biomedical research has not always addressed topics perceived as priorities by patients and their families. Patient-centered care is predicated on research taking such priorities into account. The present study surveyed women with Turner syndrome (TS; 18+ years; n = 543), parents of women with TS (n = 232), and parents of younger daughters with TS (<18 years; n = 563), regarding their priorities for research.

Mean Corpuscular Volume to White Blood Cell Ratio for Thiopurine Monitoring in Pediatric Inflammatory Bowel Disease.

Objectives: Thiopurines, commonly used to treat inflammatory bowel disease, cause lymphopenia and red blood cell macrocytosis, requiring therapeutic monitoring. Mean corpuscular volume/white blood cell (MCV/WBC) ratio has been proposed as a surrogate for therapeutic monitoring. Our aim was to investigate MCV/WBC ratio for assessing clinical response to thiopurines among pediatric patients with inflammatory bowel disease.

Communication about prognosis and end-of-life in pediatric organ failure and transplantation.

Background: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of this growing population of young people. This study characterized current practices, beliefs, and challenges specific to the disclosure of prognosis and end-of-life care topics among providers caring for pediatric organ failure and transplant populations.

Psychosocial functioning in pediatric heart transplant recipients and their families.

Across pediatric organ transplant populations, patient and family psychosocial functioning is associated with important health-related outcomes. Research has suggested that pediatric heart transplant recipients and their families are at increased risk for adverse psychosocial outcomes; however, recent investigation of psychosocial functioning in this population is lacking. This study aimed to provide a contemporary characterization of psychosocial functioning in pediatric heart transplant recipients and their families.

Perianal Crohn Disease in a Large Multicenter Pediatric Collaborative.

Background: Although perianal complications of Crohn disease (CD) are commonly encountered in clinical practice, the epidemiology of perianal CD among populations of children is poorly understood. We sought to characterize the prevalence of perianal disease in a large and diverse population of pediatric patients with CD.

Methods: We conducted retrospective analyses from a prospective observational cohort, the ImproveCareNow Network (May 2006-October 2014), a multicenter pediatric inflammatory bowel disease quality improvement collaborative.

Fistulizing Crohn's Disease Presenting After Surgery on a Perianal Lesion.

Perianal skin lesions, such as skin tags, can be an early presenting sign of Crohn's disease. Surgical intervention on these lesions may increase the risk of fistula development and lead to worse outcomes. This case series examined 8 patients who underwent surgical intervention on what appeared to be benign perianal skin lesions, only to reveal fistulas leading to the diagnosis of Crohn's disease.

Quality Improvement Targeting Adherence During the Transition from a Pediatric to Adult Liver Transplant Clinic.

The transition from pediatric to adult transplant care is a high risk period for non-adherence and poor health outcomes. This article describes a quality improvement initiative integrated into a pediatric liver transplant program that focused on improving outcomes following the transfer from pediatric to adult liver transplant care. Using improvement science methodology, we evaluated the impact of our center's transition readiness skills (TRS) program by conducting a chart review of 45 pediatric liver transplant recipients who transferred to adult transplant care.

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.

Transition readiness in pediatric patients with inflammatory bowel disease: patient survey of self-management skills.

Objective: Transition may be associated with poor health outcomes, but limited data exist regarding inflammatory bowel disease (IBD). Acquisition of self-management skills is believed to be important to this process. IBD-specific checklists of such skills have been developed to aid in transition, but none has been well studied or validated.

Variation in infliximab administration practices in the treatment of pediatric inflammatory bowel disease.

Objectives: Infliximab is used increasingly to treat inflammatory bowel disease (IBD). Infliximab is supplied in 100-mg vials. Doses that are typically calculated as 5 mg · kg⁻¹ · dose⁻¹ are commonly rounded up or down to the nearest 100 mg.

Relationship between sleep problems and health-related quality of life among pediatric liver transplant recipients.

Among adult liver transplant recipients (LTRs), sleep disturbances and fatigue are common. Sleep problems following pediatric liver transplantation may contribute to daytime fatigue and lower health-related quality of life (HRQOL). The aim of this cross-sectional study was to determine the impact of sleep problems on the HRQOL of pediatric LTRs using validated measures.

Transition of pediatric liver transplant recipients to adult care: patient and parent perspectives.

The need to prepare pediatric transplant recipients for the transfer to adult-centered transplant care has received increased attention. This study aimed to determine adolescent and young adult LTR and parent perceptions and attitudes about the transition process. LTR and their parents completed a survey assessing level of prior thought and interest in learning about transferring care, knowledge of the transition process, perceived importance of self-management skills, concerns about moving to the adult clinic, and responsibility for health management tasks.

Survey of insulin site rotation in youth with type 1 diabetes mellitus.

Objective: Injection site rotation is an important component of insulin administration and is helpful in preventing lipodystrophy in type 1 diabetes (T1DM). We examined the number of injection/infusion sites (sites) used by youth with T1DM and their perceived barriers to using new sites for insulin.

Methods: Two hundred and one youth with T1DM completed a 24-item survey about site rotation practices and barriers to site rotation during a routine diabetes appointment.

Use of continuous glucose monitoring in young children with type 1 diabetes: implications for behavioral research.

Objective: This study presents data on the use of continuous glucose monitoring (CGM) in young children with type 1 diabetes mellitus (T1DM). CGM provides moment-to-moment tracking of glucose concentrations and measures of intra- and interday variability, which are particularly salient measures in young children with T1DM.

Methods: Thirty-one children (mean age = 5.