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Abstract Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a "roadmap" for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH.

Informed consent should be seen as an essential part of health care practice; parental permission and childhood assent is an active process that engages patients, both adults and children, in health care. Pediatric practice is unique in that developmental maturation allows, over time, for increasing inclusion of the child's and adolescent's opinion in medical decision-making in clinical practice and research. [ABSTRACT FROM AUTHOR]

The authors comment on an article that suggests expanding the role of parental permission in pediatric treatment beyond the scope of 2016 policy statement and technical report issued by the American Academy of Pediatrics Committee on Bioethics on informed consent in pediatric decision making. They criticize the authors' understanding of the fundamental focus of the reports. They also question the use of a harm threshold as a framework for parental medical decision making.

Human embryonic stem cell research has emerged as an important platform for the understanding and treatment of pediatric disease; From its inception, however, it has raised ethical concerns based not on the use of stem cells themselves but on objections to the source of the cells-specifically, the destruction of preimplantation human embryos. Despite differences in public opinion on this issue, a large majority of the public supports continued research using embryonic stem cells. Given the possible substantial benefit of stem cell research on child health and development, the American Academy of Pediatric believes that funding and oversight for human embryo and embryonic stem cell research should continue. [ABSTRACT FROM AUTHOR]

The article presents the authors' view concerning the establishment of an overall quality assessment process for the ethics consultation service (ECS). Topics discussed include the significance of an overall ECS quality assessment process, an overview of the overall ECS quality assessment process as presented by the authors, and the challenges that may significantly affect the establishment of an overall ECS quality assessment process.

Efforts to limit work hours of residents spurred ongoing debate over whether patients are, in fact, safer as a result. Some ethical considerations include the following: • The patient/physician relationship may be harmed if residents are forced to leave in the middle of an evolving clinical encounter. • Residents may be hindered from following the progression of acute illnesses. • Attendings are likely working more hours as resident work hours are curtailed. [ABSTRACT FROM AUTHOR]

Purpose: Caustic ingestion is a common cause for acquired esophageal strictures in children. Thoracoscopic esophagectomy can be very useful in this setting, particularly for short segments of disease [1-4]. Thus far, the use of endoscopy to guide resection margins has not been described.Methods: A 6-year-old boy developed a tight, short esophageal stricture from a lye ingestion injury at the age of 4 years. He had a gastrostomy tube placed at the time for supplemental feedings and subsequently failed attempts at antegrade and retrograde esophageal dilatation. This video demonstrates an endoscopically guided (endoscopes simultaneously passed retrograde via the gastrostomy and antegrade through the oropharynx) thoracoscopic esophagectomy and primary anastomosis management of the stricture.Methods: In the left lateral decubitus position, four 5-mm ports were placed in the right chest in the fifth intercostal space, anterior-axillary line; sixth intercostal space, midaxillary line; fourth intercostal space, midaxillary line; and seventh intercostal space, posterior axillary line. A 5-mm 30 degrees Storz telescope and 4.9-mm and 9.6-mm Olympus endoscopes were used. The area of esophageal stricture was identified using the endoscopes and thoracoscopically dissected circumferentially. The vagus nerves were identified and circumferentially freed from the strictured esophageal segment. Primary resection and anastomosis was performed using intracorporeal sutures and then tested for leak using the endoscope via the gastrostomy site.Results: Esophagram on postoperative day (POD) 7 revealed no leak and a widely patent anastomosis. He was discharged home on a soft diet on POD 8 and continues to feed orally over 1 year following his operation.Conclusion: As demonstrated by our video, endoscopy is a useful adjunct in the performance of a thoracoscopic esophagectomy for short esophageal stricture. It is particularly helpful because it provides direct visualization of the compromised lumen and allows for a more precise resection. [ABSTRACT FROM AUTHOR]