The Changing Landscape in Pediatric Hospitals: A Multicenter Study of How Pediatric Chronic Critical Illness Impacts NICU Throughput.

OBJECTIVE: Pediatric inpatient bed availability is increasingly constrained by the prolonged hospitalizations of children with medical complexity. The sickest of these patients are chronic critically ill and often have protracted intensive care unit (ICU) stays. Numbers and characteristics of infants with chronic critical illness are unclear, which undermines resource planning in ICU's and general pediatric wards. The goal of this study was to describe infants with chronic critical illness at six academic institutions in the United States. STUDY DESIGN: Infants admitted to six academic medical centers were screened for chronic, critical illness based on a combination of prolonged and repeated hospitalizations, use of medical technology, and chronic multiorgan involvement. Data regarding patient and hospitalization characteristics were collected. RESULTS: Just over one-third (34.8%) of pediatric inpatients across the six centers who met eligibility criteria for chronic critical illness were <12 months of age. Almost all these infants received medical technology (97.8%) and had multiorgan involvement (94.8%). Eighty-six percent (115/134) had spent time in an ICU during the current hospitalization; 31% were currently in a neonatal ICU, 34% in a pediatric ICU, and 17% in a cardiac ICU. Among infants who had been previously discharged home (n = 55), most had been discharged with medical technology (78.2%) and nearly all were still using that technology during the current readmission. Additional technologies were commonly added during the current hospitalization. CONCLUSION: Advanced strategies are needed to plan for hospital resource allocation for infants with chronic critical illness. These infants' prolonged hospitalizations begin in the neonatal ICU but often transition to other ICUs and general inpatient wards. They are commonly discharged with medical technology which is rarely weaned but often escalated during subsequent hospitalizations. Identification and tracking of these infants, beginning in the neonatal ICU, will help hospitals anticipate and strategize for inpatient bed management. KEY POINTS: · 35% of inpatients with chronic critical illness are infants.. · Nearly 90% of these infants spend some time in an intensive care unit.. · 78% are discharged with medical technology..

Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness.

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, infection, disruption of family life, and the intensive utilization of resources-combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay. In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to make clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital.

Professional Responsibility, Consensus, and Conflict: A Survey of Physician Decisions for the Chronically Critically Ill in Neonatal and Pediatric Intensive Care Units.

OBJECTIVE: To describe neonatologist and pediatric intensivist attitudes and practices relevant to high-stakes decisions for children with chronic critical illness, with particular attention to physician perception of professional duty to seek treatment team consensus and to disclose team conflict. DESIGN: Self-administered online survey. SETTING: U.S. neonatal ICUs and PICUs. SUBJECTS: Neonatologists and pediatric intensivists. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We received 652 responses (333 neonatologists, denominator unknown; 319 of 1,290 pediatric intensivists). When asked about guiding a decision for tracheostomy in a chronically critically ill infant, only 41.7% of physicians indicated professional responsibility to seek a consensus decision, but 73.3% reported, in practice, that they would seek consensus and make a consensus-based recommendation; the second most common practice (15.5%) was to defer to families without making recommendations. When presented with conflict among the treatment team, 63% of physicians indicated a responsibility to be transparent about the decision-making process and reported matching practices. Neonatologists more frequently reported a responsibility to give decision making fully over to families; intensivists were more likely to seek out consensus among the treatment team. CONCLUSIONS: ICU physicians do not agree about their responsibilities when approaching difficult decisions for chronically critically ill children. Although most physicians feel a professional responsibility to provide personal recommendations or defer to families, most physicians report offering consensus recommendations. Nearly all physicians embrace a sense of responsibility to disclose disagreement to families. More research is needed to understand physician responsibilities for making recommendations in the care of chronically critically ill children.

"Stuck in the ICU": Caring for Children With Chronic Critical Illness.

OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness. DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes. SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA). SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness. INTERVENTIONS: Telephone or in-person interviews. MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients. CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.

A Snapshot of Chronic Critical Illness in Pediatric Intensive Care Units.

Children with chronic critical illness (CCI) represent the sickest subgroup of children with medical complexity. In this article, we applied a proposed definition of pediatric CCI to assess point prevalence in medical, cardiovascular, and combined pediatric intensive care units (PICUs), screening all patients admitted to six academic medical centers in the United States on May 17, 2017, for pediatric CCI (PCCI) eligibility. We gathered descriptive data to understand medical complexity and resource needs of children with PCCI in PICUs including data regarding hospitalization characteristics, previous admissions, medical technology, and chronic multiorgan dysfunction. Descriptive statistics were used to characterize the study population and hospital data. The study cohort was divided between PICU-prolonged (stay > 14 days) and PICU-exposed (any time in PICU); comparative analyses were conducted. On the study day, 185 children met inclusion criteria, 66 (36%) PICU-prolonged and 119 (64%) PICU-exposed. Nearly all had home medical technology and most ( n = 152; 82%) required mechanical ventilation in the PICU. The PICU-exposed cohort mirrored the PICU-prolonged with a few exceptions as follows: they were older, had fewer procedures and surgeries, and had more recurrent hospitalizations. Most ( n = 44; 66%) of the PICU-prolonged cohort had never been discharged home. Children with PCCI were a sizable proportion of the unit census on the study day. We found that children with PCCI are a prevalent population in PICUs. Dividing the cohorts between PICU-prolonged and PICU-exposed helps to better understand the care needs of the PCCI population. Identifying and studying PCCI, including variables relevant to PICU-prolonged and PICU-exposed, could inform changes to PICU care models and training programs to better enable PICUs to meet their unique needs.

Delirium in Children Undergoing Hematopoietic Cell Transplantation: A Multi-Institutional Point Prevalence Study.

Introduction: Delirium occurs frequently in adults undergoing hematopoietic cell transplantation, with significant associated morbidity. Little is known about the burden of delirium in children in the peri-transplant period. This study was designed to determine delirium rates, define risk factors (demographic and treatment related), and establish feasibility of multi-institutional bedside screening for delirium in children undergoing hematopoietic cell transplant. Methods: This is a multi-institutional point prevalence study. All subjects were prospectively screened for delirium twice daily using the Cornell Assessment of Pediatric Delirium over a 10-day period. De-identified data, including basic demographics and daily characteristics, were extracted from the electronic medical record. Results: Eleven North American institutions were included, 106 children were enrolled, and 883 hospital days were captured. Delirium screening was successfully completed on more than 98% of the study days. Forty-eight children (45%) developed delirium over the course of the 10-day study. Children were diagnosed with delirium on 161/883 study days, for an overall delirium rate of 18% per day. Higher delirium rates were noted in children <5 years old (aOR 0.41 for children over 5 years), and in association with specific medications (melatonin, steroids, and tacrolimus). Conclusion: Delirium was a frequent occurrence in our study cohort, with identifiable risk factors. Delirium screening is highly feasible in the pediatric hematopoietic cell transplant patient population. A large-scale prospective longitudinal study following children throughout their transplant course is urgently needed to fully describe the epidemiology of pediatric delirium, explore the effects of delirium on patient outcomes, and establish guidelines to prevent and treat delirium in the peri-transplant period.

Obstacles faced by general practitioners in Loreto Department, Peru in pursuing residency training.

INTRODUCTION: The Department of Loreto, one of the poorest regions of Peru, has an insufficient number of physicians, particularly specialists, needed to provide adequate health care for its population. The majority of Loreto physicians are GPs who have completed a one-year internship after medical school, followed by a mandatory year of rural service, with no subsequent training. Currently there are no residency training programs available in Loreto. The Loreto Ministry of Health recognizes the value in retaining its own medical school graduates and is, therefore, considering building residency programs in the 4 'basic specialties': internal medicine, pediatrics, general surgery, and obstetrics/gynecology. The objectives of this study were to: (1) characterize the population of currently practicing GPs in Iquitos and Requena in terms of demographics, current medical practice, and educational goals; (2) determine the obstacles faced by general physicians in Loreto, Peru in pursuing residency training; (3) provide baseline information to be used by medical academic institutions to develop specialization programs in Loreto. METHODS: A survey of 55 questions was created in Spanish encompassing demographics, current medical practice, education, training, and professional goals. Of the total 416 GPs in Loreto, 55 were identified in 2 locations: Iquitos and Requena. The goal was to administer the survey to each of these 55 physicians. Consent was given verbally, and 49 surveys were self-administered. Survey responses were translated into English, data were entered in EpiData and analyzed using SPSS software (SPSS Inc; Chicago, IL, USA). RESULTS: A total of 49 surveys were completed by GPs in Iquitos and Requena. Of the respondents, 84% were male, the majority were either married or in common-law relationships, with at least one child. Their average age was 37.6 years. Sixty-five percent were born in Loreto and most currently lived in Iquitos. Almost all respondents reported that they intended to pursue further training, the majority (59%) intending to pursue residency. Of those intending to complete a residency in the future, 40% specified a desired specialty from among the basic four, 22% a more specialized residency, and 37% did not specify any. The location of training sites, cost of moving to and living in Lima, and/or personal or family reasons were each identified by approximately 50% of respondents as obstacles to their pursuit of residency. Less common obstacles were: not passing the entrance exam, lack of job stability, and not knowing English. Fifty percent of the respondents only identified one obstacle, while 35% identified two and 15% identified three. CONCLUSION: Cost and location were the most significant factors preventing physicians from pursuing residency; overall, 83% of the physicians surveyed identified one or both of these as a factor that prevented them from pursuing residency. This suggests that there would be interest among the local physician population in residency programs established in Loreto.

Defining Pediatric Chronic Critical Illness for Clinical Care, Research, and Policy.

Chronically critically ill pediatric patients represent an emerging population in NICUs and PICUs. Chronic critical illness has been recognized and defined in the adult population, but the same attention has not been systematically applied to pediatrics. This article reviews what is currently known about pediatric chronic critical illness, highlighting the unique aspects of chronic critical illness in infants and children, including specific considerations of prognosis, outcomes, and decision-making. We propose a definition that incorporates NICU versus PICU stays, recurrent ICU admissions, dependence on life-sustaining technology, multiorgan dysfunction, underlying medical complexity, and the developmental implications of congenital versus acquired conditions. We propose a research agenda, highlighting existing knowledge gaps and targeting areas of improvement in clinical care, research, and policy.

Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations.

OBJECTIVES: The past 2 decades have seen an expanding pediatric population that is chronically critically ill: children with repeated and prolonged hospitalizations and ongoing dependence on technologies to sustain vital functions. Although illness complexity prompts many hospitalizations, our goal with this study was to explore modifiable patient, family, and health system contributions to excess hospital days for children with chronic critical illness (CCI). METHODS: Semistructured interviews were conducted with 51 stakeholders known for their CCI expertise. Stakeholders were from 5 metropolitan areas and were either (1) interdisciplinary providers (inpatient and/or outpatient clinicians, home health providers, foster care affiliates, or policy professionals) or (2) parents of children with CCI. Interview transcripts were qualitatively analyzed for themes. RESULTS: All stakeholders agreed that homelike settings are ideal care sites for children with CCI, yet in every region these children experience prolonged hospitalizations. The perceived causes of excess hospital days are (1) inadequate communication and coordination within health care teams and between clinicians and families, (2) widespread gaps in qualified pediatric home health services and durable medical equipment providers, (3) inconsistent parent support, and (4) policies that limit pediatric service eligibility, state-supported case management, and nonhospital care sites. CONCLUSIONS: Despite an expanding pediatric population with CCI, we lack an intentional care model to minimize their hospitalizations. In this study, we generate several hypotheses for exploring the potential impact of expanded access to home nursing, robust care coordination, and family and clinician support to reduce hospital days for this population of high health care utilizers.