RESUMO
Patients with an apparent bleeding disorder can usually be diagnosed by a careful history, physical examination, and screening laboratory tests. However, at times the constellation of bleeding signs and symptoms fail to be explained by test results and/or our current understanding of hemostatic mechanisms. One such patient is the subject of the current report. She is a 13-year-old female with a history of striking bleeding manifestations, including spontaneous hemorrhage from her eyes, scalp, hands, and feet. She was evaluated by one of the authors at a teaching hospital in Mumbai, India in March 2009 during the filming of a National Geographic Channel documentary characterizing puzzling medical disorders encountered in India. Given her unusual bleeding manifestations, she received international media attention at the time. National Geographic and a film company in the United Kingdom subsequently expressed interest in highlighting the patient to document her seemingly rare hematologic disorder and contacted the American Society of Hematology to identify an American hematologist to further investigate the case. With consent of the family and collaboration with a hematologist practicing at a teaching hospital in Mumbai, filming commenced during March 2009 in an attempt to capture the patient's diagnosis and the cultural and medical milieu in which the bleeding events occurred.
Assuntos
Hemorragia Ocular , Pele , Adolescente , Feminino , HumanosRESUMO
BACKGROUND/PURPOSE: Research has suggested that high-risk pediatric surgical patients have better outcomes when treated in resource-rich children's environments. Surgical neonates are a particularly high-risk population and some suggest that regionalization might be a strategy to improve clinical outcomes in neonatal surgical patients. We conducted a national survey of pediatric surgeons in the United States to explore their attitudes toward regionalization of neonatal surgical care. METHODS: Members of the American Pediatric Surgical Association were asked to participate in an anonymous online survey to assess both attitudes toward regionalization, as well as perceptions of the importance of various resources in providing optimal care for surgical neonates. RESULTS: Overall, 56.2% of participants favored regionalization. Surgeons whose practice was part of a training program tended to favor regionalization more, as did those from larger group practices and those who practiced at free-standing children's hospital. In addition, surgeons from larger groups and those involved with training programs more strongly favored the premise that a higher level of resource commitment should be available to treat surgical neonates. CONCLUSIONS: The impact of any national strategy to improve neonatal surgical outcomes will be large and multi-faceted. While the majority of pediatric surgeons favor regionalization, our findings demonstrate variation in this view and highlight the necessity for surgeon involvement and education that will be critical in this effort.
Assuntos
Programas Médicos Regionais , Procedimentos Cirúrgicos Operatórios/normas , Atitude do Pessoal de Saúde , Pesquisas sobre Atenção à Saúde , Humanos , Recém-Nascido , Estados UnidosRESUMO
BACKGROUND/PURPOSE: In 2000, we described the variability of pediatric surgical information on the Internet. Since then, online videos have become an increasingly popular medium for education and personal expression. The purpose of this study was to examine the content and quality of videos related to pediatric surgical diagnoses on the Internet. METHODS: YouTube™ was searched for videos on gastroschisis, congenital diaphragmatic hernia, pediatric inguinal hernia, and pectus excavatum. The first 40 English language videos for each diagnosis were reviewed for owner and audience characteristics, content and quality. RESULTS: A small majority of videos were made by medical professionals (50.63%, vs. 41.25% by lay persons and 8.13% by fundraising organizations). Eighty percent of videos were intended for a lay audience. Videos by medical professionals were more accurate and complete than those posted by lay persons. CONCLUSIONS: The YouTube™ videos varied significantly in content and quality. Videos by lay persons often focused on the emotional aspect of the diagnosis and clinical course. Videos by members of the medical profession tended to be more complete and accurate. These findings underscore the continued need for high quality pediatric surgical information on the Internet for patients and their families.