Academic Careers in Advocacy: Aligning Institutional Values Through Use of an Advocacy Portfolio.

Academic children's hospitals must embrace advocacy as a central component of their missions to discover new knowledge and improve the health of the communities and patients they serve. To do so, they must ensure faculty have both the tools and the opportunities to develop and articulate the work of advocacy as an academic endeavor. This can be accomplished by integrating the work of advocacy at the community and policy-change levels into the traditional value systems of academic medicine, especially the promotions process, to establish its legitimacy. Academic pediatric institutions can support this transformation through robust training and professional development programs and establishing opportunities, resources, and leadership positions in advocacy. The adoption of an advocacy portfolio can be used to align these activities and accomplishments to institutional values and promotion. This alignment is crucial to supporting the advocacy work of pediatricians at a time in which community engagement and systems and policy change must be added to professional activities to ensure optimal outcomes for all children.

Care of the child with Ebola virus disease.

OBJECTIVES: To provide clinicians with practical considerations for care of children with Ebola virus disease in resource-rich settings. DATA SOURCES: Review of the published medical literature, World Health Organization and government documents, and expert opinion. DATA SYNTHESIS: There are limited data regarding Ebola virus disease in children; however, reported case-fatality proportions in children are high. Ebola virus may affect immune regulation and endothelial function differently in children than adults. Considerations for care of children with Ebola virus disease are presented. CONCLUSIONS: Ebola virus disease is a severe multisystem disease with high mortality in children and adults. Hospitals and clinicians must prepare to provide care for patients with Ebola virus disease before such patients present for care, with particular attention to rigorous infection control to limit secondary cases. Although there is no proven specific treatment for Ebola virus disease, meticulous supportive care offers patients the best chance of survival.

Definitive care for the critically ill during a disaster: a framework for allocation of scarce resources in mass critical care: from a Task Force for Mass Critical Care summit meeting, January 26-27, 2007, Chicago, IL.

BACKGROUND: Anticipated circumstances during the next severe influenza pandemic highlight the insufficiency of staff and equipment to meet the needs of all critically ill victims. It is plausible that an entire country could face simultaneous limitations, resulting in severe shortages of critical care resources to the point where patients could no longer receive all of the care that would usually be required and expected. There may even be such resource shortfalls that some patients would not be able to access even the most basic of life-sustaining interventions. Rationing of critical care in this circumstance would be difficult, yet may be unavoidable. Without planning, the provision of care would assuredly be chaotic, inequitable, and unfair. The Task Force for Mass Critical Care Working Group met in Chicago in January 2007 to proactively suggest guidance for allocating scarce critical care resources. TASK FORCE SUGGESTIONS: In order to allocate critical care resources when systems are overwhelmed, the Task Force for Mass Critical Care Working Group suggests the following: (1) an equitable triage process utilizing the Sequential Organ Failure Assessment scoring system; (2) the concept of triage by a senior clinician(s) without direct clinical obligation, and a support system to implement and manage the triage process; (3) legal and ethical constructs underpinning the allocation of scarce resources; and (4) a mechanism for rapid revision of the triage process as further disaster experiences, research, planning, and modeling come to light.

Intracranial navigation using a novel device for endoscope fixation and targeting: technical innovation.

Intracranial endoscopy involves point-to-point navigation: first, in the introduction of the endoscope into a cerebrospinal fluid-containing space and, second, in the identification of a target structure. We report testing and preliminary clinical use of a device for the direct cranial fixation and point-to-point neuronavigation of a rigid ventricular endoscope. An 18-month-old female child presented with rapidly progressive macrocephaly, developmental delay and left hemiparesis. Neuroimaging revealed a large suprasellar cyst and obstructive hydrocephalus. We adapted a ball-stem device with an endoscopic working channel for direct cranial fixation over a burr hole. This device was successfully used in conjunction with MR-based neuronavigation to fenestrate the cyst. Seven months after the operation her developmental delay, macrocephaly and hemiparesis resolved. This device may be particularly effective in cases of small ventricles, ambiguous intra-ventricular landmarks, and in children too young for head-holder immobilization.

Interactive Web sites for families and physicians of pediatric intensive care unit patients: a preliminary report.

OBJECTIVE: To describe our experience with a Web-based communications program for the patients, families, and referring physicians of patients admitted to our pediatric intensive care unit. DESIGN: Prospective descriptive case series for a 32-month period from April 2000 through January 2003. SETTING: Sixteen-bed multidisciplinary medical-surgical pediatric intensive care unit (PICU). SUBJECTS: Seventy-three of 78 patients admitted to the PICU for > or =3 days and their families participated in the study, along with 26 referring physicians. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: We found that 77% (474/619) of surveyed family members and friends thought that the Web page helped them share information, 13% (82/619) were unsure, and only <1% (4/619) thought it did not help them share information. When comparing respondents who thought the Web page helped them share information with those who did not or those who did not know, internet use was significantly associated with thinking that the Web page helped them share information (p =.0007). Seventy-three percent (19/26) of physicians thought that Web page-based communication was easier than present methods to convey patient information, and 62% (16/26) replied that the Web-based communication met their expectation. Fifty-four percent (14/26) of physicians thought they were more likely to refer patients to our PICU because of the Web-based communication; this was significantly associated with physician assessment that the Web-based communication was easier than the present methods of communicating with referring physicians (p =.003). CONCLUSIONS: We conclude that both families and referring physicians find Web-based communications during a child's PICU hospitalization to be very helpful. We suggest that the Web-based PICU communications be developed and studied for both medical and economic impact.