Children With Medical Complexity: The 10-Year Experience of a Single Center.

Children with medical complexity (CMC) have chronic, multisystem health conditions, substantial health care needs, major functional limitations, and high resource use. They represent <1% of US children yet account for more than one-third of total pediatric health care costs. Health care systems designed for typical children do not meet the unique needs of CMC. In this special article, we describe the experience of our Comprehensive Care Program for CMC in a pediatric tertiary care center, from its launch in 2007 to its present model. We review the literature, describe our collective lessons learned, and offer suggestions for future directions.

A Matrix Mentoring Model That Effectively Supports Clinical and Translational Scientists and Increases Inclusion in Biomedical Research: Lessons From the University of Utah.

Physician-scientists and scientists in all the health professions are vital members of the U.S. biomedical workforce, but their numbers at academic health centers are declining. Mentorship has been identified as a key component in retention of faculty members at academic health centers. Effective mentoring may promote the retention of clinician-scientists in the biomedical workforce. The authors describe a holistic institutional mentoring program to support junior faculty members engaged in clinical and translational science at the University of Utah. The clinical and translational scholars (CATS) program leverages the resources of the institution, including the Center for Clinical and Translational Science, to augment departmental resources to support junior faculty investigators and uses a multilevel mentoring matrix that includes self, senior, scientific, peer, and staff mentorship. Begun in the Department of Pediatrics, the program was expanded in 2013 to include all departments in the school of medicine and the health sciences. During the two-year program, scholars learn management essentials and have leadership training designed to develop principal investigators. Of the 86 program participants since fiscal year 2008, 92% have received extramural awards, 99% remain in academic medicine, and 95% remain at the University of Utah. The CATS program has also been associated with increased inclusion of women and underrepresented minorities in the institutional research enterprise. The CATS program manifests institutional collaboration and coordination of resources, which have benefited faculty members and the institution. The model can be applied to other academic health centers to support and sustain the biomedical workforce.

Who will care for me next? Transitioning to adulthood with hydrocephalus.

OBJECTIVES: Hydrocephalus is a prototypical chronic condition that follows children into adulthood. The objectives of this study were to (1) review how the health care needs of young adults with hydrocephalus are not being met, (2) estimate the numbers of adults with childhood-onset hydrocephalus, (3) describe a novel program to provide care for young adults with hydrocephalus and other chronic pediatric conditions, and (4) propose national strategies to promote successful hydrocephalus transition care. RESULTS: Adults with hydrocephalus need continuous access to expert surgical and medical providers. Existing care models fail to meet this need. The number of young adults who have hydrocephalus, are aged 18 to 35 and need treatment in the United States is predicted to exceed 40000 annually within the next 2 decades. We are developing integrated teams of pediatric and adult medical and surgical specialists to provide continuous, coordinated, comprehensive care for individuals with hydrocephalus in a pediatric setting. This setting will train our future physician workforce on optimal transition care. Coordinated national efforts are also needed. CONCLUSIONS: Providers need to implement appropriate management and transition care for individuals with hydrocephalus. We must work at local and national levels to transform the care model, improve the quality of health care delivery, and improve outcomes for young adults with hydrocephalus.

How the pediatric autopsy yields valuable information in a vertically integrated health care system.

CONTEXT: Although autopsy rates have declined significantly in recent decades, studies continue to validate the autopsy as an important source of clinically relevant information, a teaching tool, and a quality assurance measure. A recent review of autopsy series showed a decline in the number of serious errors likely to have affected clinical outcome detected at autopsy during the past 46 years, with a current major error rate of 8.4% to 24.4%. OBJECTIVE: Our hypothesis was that the pediatric autopsy would uncover a significant number of major unexpected findings at the high end of the spectrum predicted by a recent review. This study assesses the unexpected findings at a pediatric hospital whose autopsy service handles both in-house (tertiary care) and referral (mostly perinatal) cases for a vertically integrated health care system. DESIGN: Data were analyzed from an autopsy effectiveness report completed for all autopsies performed in 2000. The data from this series include concordance of premortem and postmortem diagnoses, with the autopsy considered the criterion standard. The autopsy effectiveness report also provided logistic information, such as problems with consents, medical records, specimen identification, and prosection. SETTING: Pediatric autopsies were performed by members of the Pediatric Pathology Division in a freestanding children's hospital in the Intermountain West of the United States with a large rural catchment area. This hospital is part of a large health maintenance organization serving the surrounding urban and rural areas. PATIENTS: A sample of all in-house and referral autopsies for the year 2000 was examined. MAIN OUTCOME MEASURE: The percentage of cases with a major or minor diagnostic discrepancy or unexpected pathologic finding using the autopsy as the criterion standard. RESULTS: The overall autopsy rate was 40% (39 hospital autopsies and 15 forensic autopsies per 135 total deaths) and was 32% excluding forensic cases. Twenty-two additional referral autopsies from outside institutions were performed. Of 61 autopsies, 12 (20%) revealed a major diagnostic discrepancy or unexpected pathologic finding, 17 (28%) had a minor unexpected finding or additional diagnosis, 41 (67%) clarified the differential diagnosis, 46 (75%) confirmed or verified a major diagnosis, and 21 (34%) provided information regarding treatment effects. Additionally, 3 (5%) had problems with identification, and 12 (20%) had problems with consent, all of which were resolved prior to initiation of the autopsy. CONCLUSIONS: These data confirm the value of the pediatric autopsy in a children's hospital and a vertically integrated health care system. It is an important medical and quality assurance procedure for assessing the accuracy of diagnoses, clarifying differential diagnoses, yielding unexpected findings, and providing feedback regarding therapeutic outcomes.