Acute respiratory distress syndrome in children with severe motor and intellectual disabilities.
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Child↗
Biomedical subjects
Robert J Graham
Publications and source records attributed to Robert J Graham.
Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities.
BACKGROUND: Children with severe neurodevelopmental disabilities and complex medical conditions are a growing and unique segment of the pediatric population. The increasing use of life sustaining technologies has provided the chance at an extended life and increasing inclusion within the broader community. Families work to overcome personal and professional biases, clinical uncertainties, and pragmatic obstacles to improve quality of life. Little attention, however, has been paid to the unique challenges of caring for a dying child affected with neurodevelopmental delay. DISCUSSION: In this paper we outline several specific barriers to the provision of excellent end-of-life care for these children and their families. We also outline our approach for overcoming these barriers. SUMMARY: The benefit of comprehensive palliative care in select pediatric populations has been demonstrated. Extending and tailoring those service to meet the unique needs of children with severe disabilities is the next logical step in that continuum. Ultimately, acknowledging that the lives of children with neurodevelopmental disabilities and their families have a unique quality will permit the human face of medical care to keep pace with technologic advances. Appreciation of the value of a perhaps incomparable quality of life will allow for a better quality of dying for children with severe neurodevelopmental disabilities.
Attitude of Health Personnel↗
An opportunity: critical care beyond the intensive care unit.
INTRODUCTION: Development of formal systems of critical care follow-up is an essential expansion of critical care services. BACKGROUND: The impact of critical illness and intensive care services extends beyond the temporal and physical confines of critical care units. With the exception of neonatalogy, however, follow-up assessment and services have traditionally been provided through primary care or targeted subspecialist referral. As patient mortality rates decrease, intensivists have recognized the need to focus on alternative, patient-centered outcomes. Models of care with collaboration between critical care and rehabilitation services have developed, recognizing the unique skills and contributions of critical care continuity. Quality of life, symptom and morbidity assessment, socioeconomic and family impact, satisfaction, and other variables have been integrated into clinical and health services research. Critical care follow-up, however, is not standard of care. IMPLICATIONS AND CONCLUSIONS: The benefit of integrating critical care services in the prehospital setting, in the form of triage, transport, and educational efforts, has been demonstrated. Establishing greater critical care follow-up is the next logical step in the care continuum. Intensivists should assist outpatient and intermediate care providers to improve patient care while simultaneously creating a crucial feedback mechanism for quality improvement and research efforts within intensive care.
Continuity of Patient Care↗
Congenital neurodevelopmental diagnoses and an intensive care unit: defining a population.
OBJECTIVE: To identify and describe the population of children with congenital or perinatally acquired neurodevelopmental diagnoses in a pediatric intensive care unit and to assess the nature and extent of their utilization of critical care resources. DESIGN: Twelve-month, inception cohort study. SETTING: Intensive care unit at an urban, tertiary care pediatric hospital. PATIENTS AND METHODS: All pediatric intensive care unit admissions were screened for preexisting neurodevelopmental diagnoses. Computerized and chart-based medical records were reviewed for demographic, clinical, and outcome data. RESULTS: A total of 309 children with congenital neurodevelopmental diagnoses accounted for 427 pediatric intensive care unit admissions. This represented 23% of the total 1,820 admissions in 1 yr. Trisomy 21 was the most identifiable developmental abnormality (n = 25, 8%). Eighty-five percent of the children were cared for at home before hospitalization. A total of 220 of the admissions (52%) demonstrated a preexisting technology dependence. Fewer children admitted from the home-care setting had tracheostomies or were ventilator dependent. The majority of admissions were scheduled surgical admissions (45%) or for management of acute respiratory illness (26%). Of the patients with preexisting tracheostomy, nonrespiratory conditions accounted for 70% of acute admitting diagnoses. Two hundred twenty-three of the admissions (52%) required noninvasive or transtracheal ventilatory support, yet the length of stay and mortality rate were consistent with those reported in other general pediatric intensive care unit populations. The average and median length of stay were 5.4 and 2.0 days, respectively. Mortality rate was 3%. Technology support needs at discharge increased significantly from admission for enterostomy support (p =.008) and mechanical ventilation (p =.008). CONCLUSIONS: Children with congenital or perinatally acquired neurodevelopmental diagnoses represented nearly one quarter of all pediatric intensive care unit admissions at a tertiary academic center. This population has substantial ongoing medical needs, requiring utilization of intensive care resources. More rigorous investigations are needed to determine the effect of this burgeoning population in pediatric critical care, to optimize their care, and to meet the comprehensive needs of their families.
Adolescent↗
Outcome rating scales for pediatric head injury.
Intensivists, surgeons, neurologists, and others involved in pediatric intensive care units (PICUs) have an important investment in both short-and long-term outcomes of children and adolescents with head injury who are treated under their care. Outcomes are most often documented by either single- or multiple-item rating scales and are implemented both during and after hospital care. For this review, the authors have organized the content of rating scales into 6 general classes: (1) mortality prediction, (2) severity, (3) global recovery, (4) activity restrictions, (5) secondary adverse conditions, and (6) limitations in participation, quality of life, and health status. Rating scales that describe the outcomes of children and adolescents after head injury are used to monitor medical and functional recovery, guide clinical management, drive quality assurance initiatives, and conduct clinical research. The authors restrict their selective review to rating scales that describe child outcomes (vs family) and that have been reported and applied in the outcome literature. Although head injury is a major cause of mortality and short- and long-term morbidity in children and adolescents, there is no consensus on which rating scales are optimal for hospital care or community follow-up. Major considerations for clinical use are feasibility, type of outcome information needed, content breadth across multiple ages and levels of recovery, and utility in determining the short-term impact of PICU care on long-term outcome.
Activities of Daily Living↗