The next revolution in pediatric trauma care will not come from a new drug, a new surgical procedure, or new technology. It will come from a simple concept: identifying what matters most to our patients and changing what we do to optimize what matters to them. Our patients have common goals: to maximize their quality of life, to function at their fullest possible capacity, and to enjoy a long and healthy life. Although those of us who take care of injured children have been remarkably successful in addressing these goals over the past few decades, critical gaps exist in our understanding of the most basic ways that our work influences our patients' lives in these ways. We are at an inflection point when we can and should take action as health care providers and as a professional society to address the gap between what our patients expect from us and what we now deliver. Without bold changes in how we evaluate and prioritize what we do, we will not continue to make gains for our patients.
In 2016, the National Academies of Science issued a report entitled “A National Trauma System” that summarized the health impact of injury and called for action to improve trauma care. This report called for two main steps: achieving “zero preventable deaths” and minimizing the disability related to injuries.1 This list of recommendations was based, in part, on strategies that led to successes achieved in recent military conflicts. The measure for evaluating the first action was the number of “preventable deaths,” defined as deaths that could be “prevented by appropriate and timely care.” These deaths are preventable by “secondary prevention” (avoided by ensuring optimal and timely care) rather than by “primary prevention” (avoided by interventions that prevent injuries from occurring) or “tertiary prevention” (mitigated by ensuring long-term interventions).2 The report included a set of potential metrics for assessing the second action, including measures of “functional recovery and quality of life.” Today, I am going to show what we know and need to know about the steps outlined in the National Academies Report as related to pediatric trauma. I also will present the gaps that we need to bridge in each of these areas to achieve our society's goal of being the “voice of the injured child.”
Injury is a leading cause of death in children and adolescents worldwide.3 This observation is the most compelling justification for our work in pediatric trauma as individuals, within our organizations, and as a professional society. Years of life lost (YLL)—the number of years an illness or injury decreases expected life expectancy in a population—can be used to compare the impact of injury and other diseases on mortality. The number of individuals dying from a given cause is multiplied by the life expectancy at the age that death occurred to obtain a calculation of YLL. Data from the Global Burden of Disease Project from 2017 show that injuries contribute to a high proportion of YLL after infancy.4 Injury has an increasing contribution to YLL with age and becomes the most frequent cause of YLL in young adulthood (Fig. 1).
Defining how to prioritize what we need to do to reduce the health burden of pediatric injury requires a more detailed analysis of injury intentionality (e.g., unintentional or self-inflicted) and mechanisms (e.g., related to a motor vehicle or firearm). Based on data from the Centers for Disease Control from 2018, injuries are the leading cause of death after infancy in children and adolescents, accounting for about 60% of deaths.5 Motor vehicle traffic incidents (~30%), drownings (~20%), and firearm-related incidents (~15%) are the leading category of injury deaths (Fig. 2). Suicide and homicide are ranked among the top five causes of injury mortality after infancy and become the second and third leading causes of mortality in adolescents. Firearms are related to about 40% of suicide and homicide deaths in children and adolescents. Motor vehicle crashes are more common as a cause of mortality among children younger than 13 years but are surpassed in frequency among older children and adolescents by firearm-related injuries.6 The gap between the incidence of deaths related to motor vehicles and firearms has widened over the past 4 years. These data highlight the continued need to focus on primary injury prevention in these two areas.
The challenge of reducing the burden of firearm injuries has been a particular focus of my presidency this year. The Education Committee was tasked to include firearm injuries as a focus of their educational content, the Injury Prevention Committee to include a focus on secondary prevention through the American College of Surgeons “Stop the Bleed” Program. The Program Committee included a session addressing the controversies related to firearm injury prevention and an address by Peter Masiakos, MD, describing the impact of community-based interventions. This past year, PTS funded two grants that supported community-based presentations of the American College of Surgeons “Stop the Bleed” program. This work will be presented at our meeting, serving as models of how to extend this work to the local level. Finally, a task force of leaders in our organization was assembled to develop a rational position statement on firearm trauma (Fig. 3). This statement is a guideline for directing the actions or our committees, as a set of principles for interacting with outside entities, and as a foundation for our advocacy work.
Understanding the most important causes of injury mortality is only the first step in developing performance and quality improvement priorities that address preventable deaths. The next steps are to identify where these deaths occur along the trauma care continuum (from the injury scene and to the rehabilitation phase) and which deaths are preventable in each setting. Reducing preventable deaths in a prehospital setting require advances in the quality and efficiency of prehospital care, including timely and appropriate triage and transport. Addressing preventable deaths in the hospital requires improvements in the hospital-based systems and processes, including the application of established practice guidelines and improvements in their implementation by teams. Mitigating deaths occurring after discharge require strategies for ensuring appropriate follow-up care, proper use of rehabilitation resources, and coordination between the inpatient and outpatient phases of care. We now know relatively little about where deaths occur in the trauma care continuum and how preventability varies in each of these settings based on injury cause, particularly for injured children.
Two recent studies provide a contemporary assessment of the relationship between location and injury deaths in children and highlight the challenges associated with obtaining these data. Trauma registry data and death records from the State of Victoria in Australia were combined to evaluate the location of injury-related deaths in children and adults from 2006 to 2016.7 This study included a review of almost 350 children who died in the state trauma system. More injury-related deaths in children and adolescents were observed before arrival to the hospital (244 deaths) than during hospitalization (103 deaths), with the relative percentage of prehospital deaths being lower in younger children and the proportion increasing with age. A more recent study used data related to children injured in Harris County, TX in 2014.8 Using death records and regional trauma registry data, the investigators presented the location of injury-related deaths in just over 100 children. More pediatric deaths occurred after (59 deaths) than before (43 deaths) arrival to the hospital. These two studies highlight that the health burden of pediatric injury is underrepresented when considering only those deaths occurring in the hospital and that is represented in our trauma registries.
We have evidence that the location of injury death is related to the mechanism of injury in children. Using data from the State of Victoria in Australia, an association was observed between the mechanism of injury and the location of death in a cohort that included pediatric and adult injury deaths.7 The proportion of deaths occurring before and after arrival to the hospital was similar among younger children (0 to 4 years). In contrast, more deaths occurred before arrival to the hospital in an older age group (5 to 15 years). The percentage of out-of-hospital death due to an unintentional cause was highest in the youngest age group (91%) and lower (64%) in older children. This finding may be related to the occurrence of deaths due to intentional self-harm in the latter group.
The location of an injury death has an association with preventability. The relationship may be attributable to the types of variation in care that occur at each phase and the resilience of injured children to withstand these variations. Although the number of evaluated death from pediatric injury was small, data from Harris County, TX provide an insight into the features of preventable deaths in children.7 About 20% of deaths were classified as preventable, with most (73%) of the preventable deaths occurring in the hospital. These data align with the pooled estimates obtained in a meta-analysis that represented data mostly related to injured adults.9 The percentage of preventable deaths varied by location of death: 7% of prehospital deaths, 29% of hospital deaths, and all deaths after hospital discharge. About 14% of preventable deaths were in a prehospital setting and the same percentage after hospital discharge. This proportion of preventable deaths in a prehospital setting was similar to that observed in injured adults, while the percentage after hospital discharge was much lower than observed in adults. The latter finding may be related to comorbidities in adult trauma patients that do not occur in injured children. A similar percentage of all preventable deaths were due to either a blunt and penetrating mechanism, but most (68%) were related to homicide rather than an unintentional cause. Errors in the management of hemorrhage and traumatic brain injury were the two main areas identified that contributed to preventable deaths in children.
To meet the challenge of “zero preventable deaths” in children, we need to know where and when to focus our interventions and understand how these contextual features impact the choice of these interventions for injured children. Data defining these parameters are limited, particularly for pediatric trauma. Although different methods, terminology, and definitions make aggregate analysis challenging, studies addressing the prehospital deaths in injured adults show that 15%–48% are preventable, with most related to delayed treatment followed by management errors and treatment errors.10 Inadequate hemorrhage control and failure of airway management are the most common causes of preventable prehospital deaths among injured adults. Studies using methodologically sound approaches are needed to evaluate who these findings apply to injured children treated in a prehospital setting.
We have more insight into the incidence and causes of preventable deaths among injured children and adults in hospital settings. The percentage of in-hospital deaths that are preventable in adults ranges from 2.5% to 44%, with most related to a failure to achieve adequate hemorrhage control early after arrival to the hospital.11–15 The reported percentage of preventable in-hospital deaths shows a similar variability in children, ranging from 6% to 21%.8,16,17 These wide variations may be related to small sample size or to approaches used to define preventability. These factors become even more challenging given the low and declining mortality associated with pediatric injuries. Similar problems arise when evaluating the preventability of deaths that occur after hospital discharge. Although few data are available, most deaths occurring after the initial hospitalization are preventable following pediatric and adult injury.8,15 A recent review highlighted the importance of considering long-term trauma mortality after adult injury.18 Three themes were identified: the decreased long-term survival of trauma patients compared with control populations, higher mortality among those discharged to a skilled nursing facility, and the association of age, comorbidities, and discharge location with mortality. This type of study needs to be performed to assess the long-term outcome of injured children.
We need to determine where pediatric trauma deaths occur along the trauma continuum, which of these deaths are preventable, what interventions should be implemented to prevent deaths and the impact of these interventions. This work will be hard and require addressing the challenges of integrating data from different sources and labor-intensive reviews of individual cases. It is difficult to access the records of patients who died on the scene or during transport. Even when these records are available, documentation may not be sufficient for assessing preventability. Because our hospital-based data collection systems usually do not track outcomes after discharge, similar challenges exist for obtaining these data in the postdischarge setting. The Multi-Institutional Multidisciplinary Injury Mortality Investigation in the Civilian (MIMIC) Pre-Hospital Environment is an effort that was initiated in 2017 that will address this challenge.19 This study will address survivability based on the mechanism of injury, the appropriateness of the EMS response, and the type of care using data obtained from several US regions. Injured children will be assessed in this study that will include mostly injured adults.
Assessment of the preventability of in-hospital deaths and implementation of strategies for mitigating these deaths is work familiar to those who work at trauma centers. Data at individual centers are most often maintained internally and not reported as a trauma registry element or used to identify patterns and trends. The American College of Surgeons Committee on Trauma (COT) has implemented a voluntary central reporting system for preventable deaths that masks the identity of the patient and reporting trauma center to address potential medicolegal vulnerabilities. The data set will facilitate aggregation of more cases than can be achieved at any individual trauma center treating children and adults. Voluntary reporting may limit the generalizability of the findings derived from these data. Although obtaining data in a prehospital and in-hospital setting is a challenge, this challenge is more significant when assessing preventable deaths after discharge. Evaluation of the quality and impact of care provided to injured children after hospital discharge has been identified as an open area of research.20
Identification of the location and factors associated with preventable deaths is only the first step. Review of individual preventable deaths and identification of case-specific interventions should be extended to a larger scale and use uniform standards for reporting and description of preventability. This step needs to be followed by the development and evaluation of interventions that prevent these deaths. Preventable deaths can be grouped within management categories (e.g., airway management or hemorrhage control) and type of management failure (delayed diagnosis or missed intervention). The lack of uniform definitions of these factors, however, has led to highly variable groupings in previous studies. The clinical scenarios leading to preventable deaths and potential interventions for improving the quality of care are also diverse. These factors make it challenging to develop impactful interventions.
Although each addresses different aspects of care, two recent studies have shown how system-based interventions may decrease preventable deaths. The first study evaluated the impact of preventing factors associated with secondary traumatic brain injury—hypoxia, hyperventilation, and hypotension. When implemented in a prehospital setting, training to prevent these factors was associated with lower prehospital mortality among adults.21 The findings of a parallel study in children with traumatic brain injury have not yet been reported but could extend these findings to pediatric trauma care in a prehospital setting.22 The second study evaluated the impact of emergency department guidelines and resources (“pediatric readiness”) on the mortality of three cohorts of critically ill children, including those with traumatic brain injury.23 Although this study shows an associative not causative relationship between “pediatric readiness” and mortality, the findings of this study suggest how a broader implementation of system-based improvements in pediatric care might reduce preventable deaths injured children. These two studies show the potential impact of system-based interventions that are developed based on case-specific trends.
This infographic highlights the work that is needed for reducing preventable injury deaths in children (Fig. 4). First, we need to “identify” the relative frequency of pediatric injury mortality overall or within a specific population; “identify” the relative prevalence of mortality along the continuum of care; and “identify” preventability. We often focus on more accessible assessments of deaths in the hospital and less on deaths in the prehospital and after hospital setting. We are like the drunk in the parable who is looking for his keys under a streetlamp. His focus is where the light is shining and not considering where else his keys could be. Second, we need to use these data to “intervene” in two areas: improve the care process and the structure in which this care is provided. Finally, we need to “evaluate” the impact of each intervention to assess its efficacy.
At a local level, work related to “identify” is hard and expensive. Most of us work in trauma centers that have the infrastructure to perform detailed analyses of in-hospital deaths that we use for developing performance and process improvement initiatives. This work is now easier for us. Our existing systems are not supported for the same effort in a prehospital and postdischarge setting. This work is hard, requiring collaboration with the medical examiner's office, EMS providers, hospitals without trauma designation, and rehabilitation facilities. This work cannot and should not be done only for children and will require collaboration with adult trauma centers. Our contribution is needed because of our role in caring for injured children and into the importance of trauma systems for children.
Let me now turn to a second challenge area for our field and for our organization: minimizing the disability resulting from pediatric injuries. In the analogy of the drunk looking for his keys, the street light is not even on. We have yet to establish generalizable approaches for assessing short- and long-term functional outcomes after pediatric injury using practical instruments that can be performed as standard practice. “Years lived with disability” (YLD) is a useful metric for comparing the health impact of a diverse presentation of potential diseases. This metric is the product of the number of incidence cases (number of new cases of a given condition), a disability weight that assigns the severity of a disease across a scale from 0 (perfect health) to 1 (equivalent to death), and the average duration of the disease until either remission or death. Disability weights are being modified to reflect the health burden of nonfatal injuries in children.24 Using data from the Global Burden of Disease Study (2017), injuries contribute to about 3% of years lived with disability in children up to age 14 years and increasing to about 5% among those 15 to 49 years.4 These data highlight the nonfatal health burden of injury and its relative importance in relationship with other diseases.
The health burden of injury also can be assessed based on direct observation of the frequency of disability after injury. More than five million are treated for an injury in an emergency department, and over 90,000 are admitted to a trauma center.25,26 Nearly 20% of injured children treated in an emergency department will have a residual functional limitation at 5 months, and 8% will have impairment at 9 months.27 Children who are hospitalized after an injury have a significantly higher risk of long-term functional impairment, with most having a residual impairment at 1 year.27,28 Similar findings have been noted for the recovery of health-related quality of life. Although most return to baseline at 4 months, hospitalized children with severe injury have a slower improvement in quality of life and have values lower than population norms at 1 year.28,29
Despite the importance of acquired disability, approaches for evaluating and improving pediatric trauma care have depended primarily on measuring and comparing mortality. Over the past few decades, the in-hospital mortality of injured children treated at trauma centers has declined. Data from the Pennsylvania Trauma Outcome Study highlight this decline in in-hospital mortality: a decrease from 3.4% to 0.9% mortality between 1986 and 2015 (data obtained from Pennsylvania Trauma Systems Foundation, Camp Hill, PA). This decline has been a significant accomplishment and is because of the dedicated work of those caring for injured children.
Mortality remains the most common outcome measure for assessing quality and comparing treatments at trauma centers despite this decline. In a survey of trauma centers treating injured children, mortality was the only outcome measurement used at discharge for the assessment of quality. A review of 34 studies since 1990 describing the impact of trauma systems on pediatric trauma care identified mortality as the primary discharge outcome in all but two studies.30 Mortality after pediatric injuries is now sufficiently low that it is difficult or even impossible to use it as a global outcome metric. Data from the ACS Pediatric TQIP report from 2019 highlight this problem, showing that only seven of 147 reporting centers have expected mortality that is below and five centers have mortality that is above expected mortality in a risk-adjusted model.31
Determining long-term outcomes after injury is challenging because of the need to track patients and their families after discharge and administer specialized and sometimes time-consuming assessments.32 Many instruments for measuring outcomes other than mortality after pediatric injuries have been evaluated.33 The best metrics for assessing outcomes meaningful to the lives of injured children and their families, however, have not been determined. The ideal measure should be reliable (reproducible by different raters and in different settings), valid (reflects what it is intended to be measured), detect differences over time, need only a brief time for administration, require minimal training for administration, and be applicable to children of all ages. We do not need to create new metrics: many now exist that have some or all features. Our challenge is to choose and implement the optimal measure, decide which populations of injured children to assess, determine the optimal time of initial and follow-up assessments, and identify the modes of obtaining these assessments that ensure maximal data capture.
The routine collection of outcomes other than mortality has not been accomplished at the national level in the United States. The Victorian State Trauma Registry in Australia can serve as a model. This registry has included assessments of the short- and long-term functional status of injured children sustaining major injuries, achieving a 12-month follow-up rate of 87%.34 These assessments include three measures of functional status (Glasgow outcome scale [GOS], functional independence measure, and the King's Outcome Scale for Childhood Head Injury) and health-related quality of life EuroQol 5 dimensions [EQ-5D] instrument) administered after discharge by telephone interview. This high rate of follow-up, however, was obtained in a relatively small population area (~six million overall) and in a setting in which most children with major injuries are treated at one hospital. Follow-up in this program is also limited to injured children and adults who have sustained a major injury, defined using criteria that include injury type and severity and resource use. This study has shown that the predicted probability of functional recovery is about 40% and of predicted mean physical and psychosocial scores of the PedsQL of about 85% at follow-up.34
Because of the challenges of obtaining postdischarge outcome data, evaluation of functional status at the time of hospital discharge has been a focus of several previous studies. If discharge assessment is sufficiently predictive of long-term outcomes, these assessments may be desirable because of the ease of implementation. Several factors limit their generalizability and widespread use of the findings from previous studies assessing discharge evaluations, including a focus on specific injuries, limitation to particular age groups, performance only in research settings, and the lack of a champion to promote broader implementation.35 Although not providing a complete assessment of the impact of injury, evaluation of the status at the time of discharge may be possible using the resources available at many trauma centers. A tool for assessing functional outcomes at discharge should capture the spectrum of possible impairment without being challenging to use or time-consuming to apply.
The Functional Status Scale (FSS) is one tool that has these features. The FSS is an age-independent measure that can be obtained in less than 5 minutes from the medical record or the patient's health providers. The FSS includes the assessment of six domains: mental status, sensory function, communication, motor function, feeding, and respiratory function. Raters classify functioning in each domain as “normal” to “very severe dysfunction,” with total scores ranging from 6 (best) to 30 (worst). The FSS has been shown to be associated morbidity based on physiological profiles and applied in critical care settings.36,37 We evaluated the potential value of FSS as a discharge measure of functional status.38 We performed a retrospective analysis of the outcomes of 553 injured children who admitted to a pediatric intensive care unit at one of seven centers in the National Institutes of Health Critical Care (CPCCRN) research network. Most of these patients had an injury severity score (ISS) >9, most frequently attributable to a more than moderate (Abbreviated Injury Scale, >2) head injury. Most patients had a normal functional status before being injured, and almost 80% returned to a normal at discharge. New morbidity measured using FSS was associated with a higher ISS, more moderately severe injuries, and more body regions with more than a moderately severe injury. These findings support the value of FSS as a measure of functional status after injury.
In March 2018, CPCCRN initiated a prospective observational study of the functional outcome and health-related quality of life in injured children. This study completed enrollment in February 2020. This multi-intuitional study will evaluate a population of hospitalized children with an injury that is classified as serious or more (Abbreviated Injury Scale > 2) using new morbidity shown with FSS as the primary endpoint. In addition to defining cohorts of injured children at most risk for impairment in these domains, the association between discharge and long-term status will be evaluated. Given the resources needed to obtain these assessments in routine practice, this study's deliverables will facilitate the design of real-world assessment strategies that focus resources on those at most risk and determine the value of more easily performed discharge assessments such as FSS.
Although our work is in a research setting with parents and guardians being paid for participation, we have attained several insights into how outcome assessments should be assessed after pediatric injuries. First, we have studied children with injuries making them at high risk for impairment to reduce the required effort needed for discharge and especially postdischarge assessment. Consistent with our previous work using FSS, we have observed that most children return to baseline function at discharge in this higher risk cohort. Second, tracking patients for discharge assessment is surprisingly challenging. A large cohort of patients with serious injuries is often not treated by the main trauma service during hospitalization. A additional cohort of injured patients may be treated on the trauma service but transferred for the remainder of their hospitalization to another service. Methods are needed for tracking these patients until the time of discharge. Approaches are similarly required to obtain assessments of patients who are discharged over the weekend or holiday. Third, accurate and redundant contact information is needed to ensure a high rate of contact for after discharge assessments. In addition to verifying the accuracy of this information with parents and guardians, getting email contact information and alternative family contact information increases the likelihood of completing follow-up assessments. Finally, a tiered approach to follow-up assessment is needed to obtain a postdischarge assessment that includes phone contact, email contact, and chart review.
Nonmortality outcome assessments, even when obtained at discharge, have not been adopted or sustained at a national level in the United States. An example is the functional independence measure score that was once included in the National Trauma Data Bank. This infographic that outlines the actions that we need to take in this area as providers of pediatric trauma care and as an organization with a mission to be the advocate for the injured child (Fig. 5). We first need to define the objectives of this work. The most obvious objective is to facilitate benchmarking and evaluation of our performance in a way that mortality falls short. We next need to identify metrics that can be scaled to assess functional status, health-related quality of life, and other nonmortality measures relevant to the health burden of pediatric injury. Selecting assessments that can be scaled for use in every trauma center will move this work out of a research context. Even an approach that relies on a single measure or that is obtained at a single sampling period, such as the time of discharge, will be desirable if the goal of scalability can be achieved. A broader panel of metrics used over longer follow-up can follow, leveraging the infrastructure and insights gained from an initial effort. We need to define the populations to target for evaluation. Although a goal of broad application is desirable, initial attention should be focused on groups with the most health impact of injury. We need to be creative in high we capture these data, relying on a multimodality strategy that the many electronic modes of communication that families use. The long-term sustainability of these assessments will require rigorous evaluation of the quality of the assessments and the identification and addressing of barriers to sustainability. Providing timely and accurate results to those collecting and using the data is an essential step in ensuring sustainability.
The final infographic summarizes the essential statistics that support my presentation today (Fig. 6). Most pediatric deaths are related to injuries. Among deaths due to injury, almost half may occur outside the hospital. We need to refocus our attention to preventable deaths in prehospital and after-discharge settings. About one fifth of injury deaths are preventable, with the percentage of preventable deaths varying based on location. Although we should remain focused on primary prevention, we should direct renewed attention toward secondary and tertiary prevention efforts, particularly at the systems level. About one third of injury-related are related to motor vehicles and one fourth to firearms. Although the distribution between these two causes continues to evolve, firearm injuries account for an increasing proportion of injuries in children, a finding requiring action Functional impairment is common after injury, with about one fifth of children treated in the emergency room for an injury having limitations months later. We need scalable and sustainable approaches for measuring nonmortality outcomes that will allow benchmarking of performance and measurement of the health burden of pediatric injury.
The addressing the two areas that I have discussed today will be challenging but will be needed for our impact on the injured children to continue and grow. I hope that my comments today will serve as a framework for our continued work as individuals, as leaders in our home institutions and as a professional organization. In our eighth year as an organization, PTS has the infrastructure and resources to be a leader in making changes in these areas. I invite you to take on these challenges as “a voice for the injured child.”
The author declares no funding or conflicts of interest.
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