Background: Kawasaki disease is an acute vasculitis of childhood that leads to coronary artery aneurysms in ≈25% of untreated cases. It has been reported worldwide and is the leading cause of acqui...

Diagnosis, Treatment, and Long-Term Management of Kawasaki Disease: A Scientific Statement for Health Professionals From the American Heart Association.

Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home,” are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults. It also includes new and updated sections on definition and guiding principles, the status of health care transition preparation among youth, barriers, outcome evidence, recommended health care transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. The clinical report also includes new recommendations pertaining to infrastructure, education and training, payment, and research.

https://pediatrics.aappublications.org/content/pediatrics/early/2018/10/18/peds.2018-2587.full.pdf

Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home

Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care. The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth, including those who have special health care needs and those who do not. This process includes ensuring that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as the person moves from adolescence to adulthood. A well-timed transition from child- to adult-oriented health care is specific to each person and ideally occurs between the ages of 18 and 21 years. Coordination of patient, family, and provider responsibilities enables youth to optimize their ability to assume adult roles and activities. This clinical report represents expert opinion and consensus on the practice-based implementation of transition for all youth beginning in early adolescence. It provides a structure for training and continuing education to further understanding of the nature of adolescent transition and how best to support it. Primary care physicians, nurse practitioners, and physician assistants, as well as medical subspecialists, are encouraged to adopt these materials and make this process specific to their settings and populations.

Clinical report - Supporting the health care transition from adolescence to adulthood in the medical home

Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous guidelines have highlighted this, but numerous important advances have been noted recently. These advances cover all specialty fields involved in the care of girls and women with TS. This paper is based on an international effort that started with exploratory meetings in 2014 in both Europe and the USA, and culminated with a Consensus Meeting held in Cincinnati, Ohio, USA in July 2016. Prior to this meeting, five groups each addressed important areas in TS care: 1) diagnostic and genetic issues, 2) growth and development during childhood and adolescence, 3) congenital and acquired cardiovascular disease, 4) transition and adult care, and 5) other comorbidities and neurocognitive issues. These groups produced proposals for the present guidelines. Additionally, four pertinent questions were submitted for formal GRADE (Grading of Recommendations, Assessment, Development and Evaluation) evaluation with a separate systematic review of the literature. These four questions related to the efficacy and most optimal treatment of short stature, infertility, hypertension, and hormonal replacement therapy. The guidelines project was initiated by the European Society for Endocrinology and the Pediatric Endocrine Society, in collaboration with The European Society for Pediatric Endocrinology, The Endocrine Society, European Society of Human Reproduction and Embryology, The American Heart Association, The Society for Endocrinology, and the European Society of Cardiology. The guideline has been formally endorsed by the European Society for Endocrinology, the Pediatric Endocrine Society, the European Society for Pediatric Endocrinology, the European Society of Human Reproduction and Embryology and the Endocrine Society. Advocacy groups appointed representatives who participated in pre-meeting discussions and in the consensus meeting.

/pdf/clinical-practice-guidelines-for-the-care-of-girls-and-women-1qxd9a26qu.pdf

Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting

INTRODUCTION: The transition between paediatric and adult care for young people with chronic illness or disability is often poorly managed, with adverse consequences for health. Although many agree that adolescent services need to be improved, there is little empirical data on which policies can be based. OBJECTIVES: To systematically review the evidence of effectiveness of transitional care programmes in young people aged 11-25 with chronic illness (physical or mental) or disability, and identify their successful components. DESIGN: A systematic literature review in July 2010 of studies which consistently evaluated health outcomes following transition programmes, either by comparison with a control group or by measurement pre-intervention and post-intervention. RESULTS: 10 studies met the inclusion criteria, six of which showed statistically significant improvements in outcomes. Descriptive analysis identified three broad categories of intervention, directed at: the patient (educational programmes, skills training); staffing (named transition co-ordinators, joint clinics run by paediatric and adult physicians); and service delivery (separate young adult clinics, out of hours phone support, enhanced follow-up). The conditions involved varied (eg, cystic fibrosis, diabetes mellitus), and outcome measures varied accordingly. All six interventions that resulted in significant improvements were in studies of patients with diabetes mellitus, with glycosylated haemoglobin level, acute and chronic complications, and rates of follow-up and screening used as outcome measures. CONCLUSIONS: The most commonly used strategies in successful programmes were patient education and specific transition clinics (either jointly staffed by paediatric and adult physicians or dedicated young adult clinics within adult services). It is not clear how generalisable these successful studies in diabetes mellitus will be to other conditions.

https://adc.bmj.com/content/archdischild/96/6/548.full.pdf

Improving the transition between paediatric and adult healthcare: a systematic review

Objective The aim of this study was to develop the Transition Readiness Assessment Questionnaire (TRAQ), a measure of readiness for transition from pediatric to adult healthcare for youth with special health care needs (YSHCN). Methods We administered TRAQ to 192 YSHCN aged 16–26 years in three primary diagnostic categories, conducted factor analysis, and assessed differences in TRAQ scores by age, gender, race, and primary diagnosis type. Results Factor analysis identified two TRAQ domains with high internal consistency: Skills for Self-Management and Skills for Self-Advocacy. Each domain had high internal consistency. In multivariate regression models, older age and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Management, and female gender and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Advocacy. Conclusions Our initial validation study suggests the TRAQ is a useful tool to assess transition readiness in YSHCN and to guide educational interventions by providers to support transition.

/pdf/measuring-the-transition-readiness-of-youth-with-special-4h77v1kx7a.pdf

Xiaoping Yin

Papers

Measuring the Transition Readiness of Youth with Special Healthcare Needs: Validation of the TRAQ—Transition Readiness Assessment Questionnaire