Caring for Children with Medical Complexity: Perspectives of Primary Care Providers.

OBJECTIVE: To describe typical care experiences and key barriers and facilitators to caring for children with medical complexity (CMC) from the perspective of community primary care providers (PCPs). STUDY DESIGN: PCPs participating in a randomized controlled trial of a care-coordination intervention for CMC were sent a 1-time cross-sectional survey that asked PCPs to (1) describe their experiences with caring for CMC; (2) identify key barriers affecting their ability to care for CMC; and (3) prioritize facilitators enhancing their ability to provide care coordination for CMC. PCP and practice demographics also were collected. RESULTS: One hundred thirteen of 155 PCPs sent the survey responded fully (completion rate = 73%). PCPs endorsed that medical characteristics such as polypharmacy (88%), multiorgan system involvement (84%), and rare/unfamiliar diagnoses (83%) negatively affected care. Caregivers with high needs (88%), limited time with patients and caregivers (81%), and having a large number of specialists involved in care (79%) were also frequently cited. Most commonly endorsed strategies to improve care coordination included more time with patients/caregivers (84%), summative action plans (83%), and facilitated communication (eg, e-mail, phone meetings) with specialists (83%). CONCLUSIONS: Community PCPs prioritized more time with patients and their families, better communication with specialists, and summative action plans to improve care coordination for this vulnerable population. Although this study evaluated perceptions rather than actual performance, it provides insights to improve understanding of which barriers and facilitators ideally might be targeted first for care delivery redesign.

Variability in Management of First Cerebrospinal Fluid Shunt Infection: A Prospective Multi-Institutional Observational Cohort Study.

OBJECTIVES: To describe the variation in approaches to surgical and antibiotic treatment for first cerebrospinal fluid (CSF) shunt infection and adherence to Infectious Diseases Society of America (IDSA) guidelines. STUDY DESIGN: We conducted a prospective cohort study of children undergoing treatment for first CSF infection at 7 Hydrocephalus Clinical Research Network hospitals from April 2008 through December 2012. Univariate analyses were performed to describe the study population. RESULTS: A total of 151 children underwent treatment for first CSF shunt-related infection. Most children had undergone initial CSF shunt placement before the age of 6 months (n = 98, 65%). Median time to infection after shunt surgery was 28 days (IQR 15-52 days). Surgical management was most often shunt removal with interim external ventricular drain placement, followed by new shunt insertion (n = 122, 81%). Median time from first negative CSF culture to final surgical procedure was 14 days (IQR 10-21 days). Median duration of intravenous (IV) antibiotic use duration was 19 days (IQR 12-28 days). For 84 infections addressed by IDSA guidelines, 7 (8%) met guidelines and 61 (73%) had longer duration of IV antibiotic use than recommended. CONCLUSIONS: Surgical treatment for infection frequently adheres to IDSA guidelines of shunt removal with external ventricular drain placement followed by new shunt insertion. However, duration of IV antibiotic use in CSF shunt infection treatment was consistently longer than recommended by the 2004 IDSA guidelines.

Pediatric Critical Care Resource Use by Children with Medical Complexity.

OBJECTIVES: To examine the proportionate use of critical care resources among children of differing medical complexity admitted to pediatric intensive care units (ICUs) in tertiary-care children's hospitals. STUDY DESIGN: This is a retrospective, cross-sectional study of all children (<19 years of age) admitted to a pediatric ICU between January 1, 2012, and December 31, 2013, in the Pediatric Health Information Systems database. Using the Pediatric Medical Complexity Algorithm, we assigned patients to 1 of 3 categories: no chronic disease, noncomplex chronic disease (NC-CD), or complex chronic disease (C-CD). Baseline demographics, hospital costs, and critical care resource use were stratified by these groups and summarized. RESULTS: Of 136 133 children with pediatric ICU admissions, 53.0% were categorized as having C-CD. At the individual-encounter level, ICU resource use was greatest among patients with C-CD compared with children with NC-CD and no chronic disease. At the hospital level, patients with C-CD accounted for more than 75% of all examined ICU resources, including ventilation days, ICU costs, extracorporeal membrane oxygenation runs, and arterial and central venous catheters. Children with a progressive condition accounted for one-half of all ICU resources. In contrast, patients with no chronic disease and NC-CD accounted for less than one-quarter of all ICU therapies. CONCLUSION: Children with medical complexity disproportionately use the majority of ICU resources in children's hospitals. Efforts to improve quality and provide cost-effective care should focus on this population.

Risk factors for first cerebrospinal fluid shunt infection: findings from a multi-center prospective cohort study.

OBJECTIVE: To quantify the extent to which cerebrospinal fluid (CSF) shunt revisions are associated with increased risk of CSF shunt infection, after adjusting for patient factors that may contribute to infection risk. STUDY DESIGN: We used the Hydrocephalus Clinical Research Network registry to assemble a large prospective 6-center cohort of 1036 children undergoing initial CSF shunt placement between April 2008 and January 2012. The primary outcome of interest was first CSF shunt infection. Data for initial CSF shunt placement and all subsequent CSF shunt revisions prior to first CSF shunt infection, where applicable, were obtained. The risk of first infection was estimated using a multivariable Cox proportional hazard model accounting for patient characteristics and CSF shunt revisions, and is reported using hazard ratios (HRs) with 95% CI. RESULTS: Of the 102 children who developed first infection within 12 months of placement, 33 (32%) followed one or more CSF shunt revisions. Baseline factors independently associated with risk of first infection included: gastrostomy tube (HR 2.0, 95% CI, 1.1, 3.3), age 6-12 months (HR 0.3, 95% CI, 0.1, 0.8), and prior neurosurgery (HR 0.4, 95% CI, 0.2, 0.9). After controlling for baseline factors, infection risk was most significantly associated with the need for revision (1 revision vs none, HR 3.9, 95% CI, 2.2, 6.5; ≥2 revisions, HR 13.0, 95% CI, 6.5, 24.9). CONCLUSIONS: This study quantifies the elevated risk of infection associated with shunt revisions observed in clinical practice. To reduce risk of infection risk, further work should optimize revision procedures.