Methodologic Considerations for Transition Research Using the National Survey of Children with Special Health Care Needs: A Systematic Review of the Literature.

The purpose of this review was to describe methodologic considerations in using the National Survey of Children With Special Health Care Needs (NS-CSHCN) for transition research in terms of variable inclusion and definition of transition outcomes and to provide suggestions for using NS-CSHCN for transition research. A systematic review was conducted. Inclusion criteria included use of NS-CSHCN data and transition as an outcome variable. Fourteen studies were included. Ten (71%) studies evaluated a sample of all CSHCN. Ten (71%) articles used all four variables recommended by the Maternal and Child Health Bureau core outcome on transition. Other variables included patient-centered medical home. The NS-CSHCN provides a rich dataset that can be used in transition research addressing transition preparation from the parent perspective. Using the NS-CSHCN, we recommend analyzing all variables related to the Maternal and Child Health Bureau core outcome for transition, variables related to patient-centered medical home, and further analysis of specific health conditions.

Measurable Outcomes After Transfer From Pediatric to Adult Providers in Youth With Chronic Illness.

Children with chronic medical conditions are requiring transition services to prepare for transfer of care. There has been little data on what qualifies as a successful transition or how to measure this goal. The purpose of this review was to identify measurable patient-level outcomes for transitioning youth with chronic illness from pediatric to adult health care. An integrative literature search was conducted using CINAHL and OVID Medline. Key words included transition to adult care and health transition. Research articles published between 2002 and 2015 and reported on measurable patient-level outcomes in youth with chronic illnesses were included. The initial search yielded 556 articles and 19 articles were selected. Most of the research reporting on outcomes after transfer is nonexperimental using secondary data. Additionally, there is inconsistency in the use of term transition. In the specific outcomes identified, there is little uniformity in measurement both in terms of timing and standardization of measurement. Further research is needed on outcomes after transfer that includes standardized measures and time intervals in order to evaluate successful transition services. This research is essential for health care providers who are instrumental in supporting young people during this high risk period.

Setting the stage for development of a program for adolescent heart transplant recipients to transition to adult providers: An integrative review of the literature.

PURPOSE: This integrative review of the literature was undertaken to determine if there was a body of knowledge to support a transition program in an adolescent heart transplant population. CONCLUSIONS: No studies were found involving a heart transplant transition program for adolescents. A literature review for transition in other chronic illness areas was undertaken. Youth with chronic illness are inadequately prepared to transfer to adult providers. Transition programs should be developed. These programs should be tailored to suit individual needs. They should teach disease knowledge and encourage participation in self-management skills. Participation in a transition program improved patients' quality of life and improved their knowledge about their disease. PRACTICE IMPLICATIONS: Nurses are in a unique position with chronically ill adolescents to promote positive behaviors at every interaction. Encouraging self-management behaviors will support these youth as they prepare to become adults.

Cardiac transplantation in twins with autosomal dominant Emery-Dreifuss muscular dystrophy.

Emery-Dreifuss muscular dystrophy (EDMD) is a neuromuscular disorder resulting in progressive muscle weakness, contractures, and cardiomyopathy. We report successful cardiac transplantation in identical twin brothers with autosomal dominant EDMD, complicated by ventricular arrhythmias and end-stage cardiomyopathy. Early recognition of progressive cardiac disease and subsequent cardiac transplantation are lifesaving in children with EDMD.

Idiopathic colitis following cardiac transplantation: three pediatric cases.

Colitis can cause significant morbidity in pediatric solid organ transplant recipients. In many cases, despite intensive evaluation, a specific infectious, inflammatory, or immunologic etiology is not identified, and idiopathic colitis may be the ultimate diagnosis. We defined idiopathic colitis as the presence of gastrointestinal symptoms (vomiting, diarrhea, abdominal pain) with inflammatory changes seen on intestinal biopsy in the absence of identifiable bowel disease. We describe three cases of idiopathic colitis following cardiac transplantation. In each case, the post-transplant course was complicated by persistent abdominal pain, diarrhea, and in two cases, vomiting. All three patients' post-transplant courses were marked by multiple graft rejection episodes, and all received intensified immune therapy in addition to usual maintenance immunosuppression. Differential diagnosis of the patients' gastrointestinal symptoms included drug side effect, indolent opportunistic infections, inflammatory bowel disease, post-transplant lymphoproliferative disease, and microvascular ischemic colitis. Continued symptoms led these patients to extensive evaluation including imaging studies, endoscopy and tissue biopsy, and stool, blood and tissue cultures for viral, bacterial and parasitic pathogens. Definitive differentiation presented significant diagnostic challenge, and once identifiable etiologies were excluded, the diagnosis of idiopathic colitis was assigned. We conclude that idiopathic colitis following pediatric cardiac transplantation can be a cause of significant morbidity. Endoscopic evaluation of patients who present with gastrointestinal symptoms after transplant is warranted to identify the presence of idiopathic colitis once common causes are ruled out. Further study is needed to identify its incidence, etiology, therapeutic options and prognosis.