Hi, I'm Nivi Pinto from the Children's Hospital of Philadelphia, and it's my pleasure to be here today to discuss functional outcomes in PICU survivorship pre-COVID-19. I have no relevant disclosures. Today, I will describe the history of PICU survivorship, characterizing functional outcomes among survivors, and highlighting interventions to improve their survivorship. Before we can talk about survivorship, we need to take a step back and look at pediatric mortality. After the establishment of the first PICUs in the 1950s and 1960s, pediatric mortality declined dramatically. By 1982, mortality was 11%, and this number continued to decline. By 2006, mortality was just under 5%. The centralization of PICUs with dedicated intensivists and the establishment of pediatric critical care training programs were associated with lower odds of mortality. By 2011, mortality reached a historic low. Rates were between 2% and 3% among the sites in the collaborative Pediatric Critical Care Research Network, CAPCORN, depicted here. These accomplishments are truly remarkable and beg the next question, if we're this good, are we done? The answer depends. If we look at the what behind what we do, caring for critically ill and injured children, perhaps we are done. Maybe we just can't get better than 2% to 3%. If we shift and turn to the how behind what we do, advancing science, we see that we can still move the needle. Through innovation and discovery, we can continue to improve patient care. But it's really about the why behind what we do. Saving lives with cutting-edge science doesn't tell the whole story. The measure of our success is not only ensuring that children survive, but that they thrive. Embracing our why, we know that critical illness begins and ends long before children enter and leave our ICUs. How do we navigate the world outside of the ICU? Fortunately, it's not entirely uncharted territory. We may have indeed traded mortality for morbidity. In 1982, morbidity was 8.4% and rose to nearly 18% by 2006. Again, looking at the Capcorn sites, we see that morbidity was 4.8%, nearly double the mortality seen in 2011. During the last two decades, there has been an explosion in research in this area. The number of manuscripts published each year is depicted by the blue columns. The solid black line represents the number of unique instruments used to study these outcomes each year. The year 2000 marked a significant turning point. Not only did the number of manuscripts increase, but the number of unique instruments also skyrocketed, providing insight into PICU survivorship. We are starting to identify what the journey for PICU survivors looks like. To wrap our heads around this journey, we developed a conceptual framework. The child is at the center of the conceptual framework, recognizing that children can't be considered without the context of their families. Post-intensive care syndrome in pediatrics refers to the physical, cognitive, emotional, and social health problems that face children after critical illness. We added the domain of social health to recognize that children and their families may have difficulty reintegrating into society. We also recognize that a child's developmental trajectory influences their functional outcomes. On the next several slides, we will focus on these different aspects of function. What exactly are functional outcomes? Functional outcomes are patient-centered conceptualization of physical health. They're more comprehensive than any single aspect of physical health, like mobility or endurance. They depend on developmental trajectories as well as baseline status. Poor function is associated with increased resource utilization, longer lengths of stay, post-discharge morbidity and mortality, and may be more prevalent and pervasive than other deficits such as cognitive health or psychosocial health. What we know about functional health is that outcomes are highly variable and depend on the questions we're asking. The respondent, the time point, and the subpopulation assessed influence our understanding of prevalence. For example, when clinicians are queried about functional deficits using objective scoring tools, they report up to 10% prevalence, whereas patient self-report and proxy report notes a prevalence of 82%. The timing also makes a difference. At discharge, prevalence is up to 36% in survivors, whereas at six months, the prevalence was noted to be 26%, and at two years, up to 13%. Subpopulations may have a heightened risk of functional deficits, with 34% of sepsis survivors and 51% of traumatic brain injury survivors having functional deficits. If we look longitudinally and not at discrete intervals, we see that PICU survivors remain medically vulnerable over time. We found that children experience cumulative increases in new morbidity and mortality from discharge to three-year follow-up. At discharge, the prevalence was 9%, and by three-year follow-up, this increased to 21% in our cohort. Karen Chun's work in Canada similarly found a sustained impact of critical illness on function. At the three-month mark, recovery was at its height. At six months, a third of children still had not recovered to their baseline level of function. We've identified risk factors for poor function that fall into three buckets, patient-related, diagnosis-related, and therapy-related. Both higher baseline function and poor baseline function have been associated with poor outcome, suggesting that some children may have further to fall and some children may have very little reserve. Younger age also affects long-term function. Diagnosis-related risk factors include neurologic insult, the severity of illness, and organ dysfunction. Therapy-related factors include length of stay and PICU-acquired complications. Disability is not limited to physical function. Cognitive function greatly affects overall function. It's easy to think about this when we think about how problems with attention, memory, and processing speed affect everyday functioning. The prevalence of cognitive deficits that were newly acquired were reported to be 3.4% among PICU survivors. Assessing prevalence is complicated by the fact that many of these children lack baseline assessments. There's a heightened risk of cognitive deficits among children who experience sepsis and meningitis and among those who require ECMO and ECPR. Thinking about our three buckets again, risk factors for cognitive decline include younger age at illness, older age at follow-up, and lower socioeconomic status. Diagnoses related to risk of poor cognitive function include neurologic injury, trauma, toxins, and oncologic diagnoses. Therapy-related factors include invasive therapies such as ECMO and mechanical ventilation, the need for CPR, and the use of opioids. Function is also affected by emotional health. Emotional health problems may arise during the hospitalization and may persist after discharge. They tend to peak later with reports of emergence at 12 months versus other deficits appearing at three months after discharge. Assessment is limited by the availability of diagnostic and reporting tools, and this may result in missing emotional health problems, particularly among young children. Importantly, emotional health problems may manifest as readmissions for physical health problems. On this slide, we see a variety of emotional health problems and the prevalence where known among PICU survivors. Risk factors for poor emotional health include age, severity of illness, and the number of invasive procedures required. Another important determinant of overall function is social function, which refers to the process of reintegrating into routines, activities, and communities. To understand social functioning, we must consider the child in the child's family context. Children in their families may experience social isolation and difficulty with existing or new relationships and friendships. They may experience stigma and the need to rebuild their identities. Families also experience medicalization of the home and having their schedules revolve around the PICU survivor, as seen in this complex social network drawn by a parent of a PICU survivor. Parental stress, including loss of employment, financial burden, and psychological concerns are bidirectional and may affect the child's ability to access needed resources and supports. Finally, function is also affected by health-related quality of life, which is a patient-reported outcome that spans all aspects of health, including physical, cognitive, emotional, and social health. Health-related quality of life tends to be very low at PICU discharge and generally recovers over one year. Ultimately, post-PICU health-related quality of life is equal to pre-PICU health-related quality of life. Risk factors for poor health-related quality of life include comorbidities, post-traumatic stress disorder, socioeconomic characteristics, and home characteristics. Parental factors such as education, functioning, and anxiety and depression are also important. Other determinants of health-related quality of life include admission diagnoses, invasive therapies, CPR, and duration of hospital stay. Overall, these studies tell us that function recovery varies over time and is affected by patient, diagnosis, and therapy-related factors. For example, here we see the solid blue line representing children with good baseline function. They experience impairment at discharge, and the dashed blue line represents children who make a full recovery, whereas the solid blue curve represents children who recover but incompletely. Similarly, the green curve represents children with poor baseline function who sustain impairment at discharge and make an incomplete recovery. So what we see is that recovery takes time, and the extent of recovery depends on who we study. We also know that what we measure affects our understanding of the prevalence of functional deficits. These studies tell us that the trajectory for functional recovery may look very different than the trajectory for health-related quality of life recovery. Who we ask also affects our understanding. Clinicians may report higher levels of recovery than patients themselves or their proxies. When we assess is also important. Assessing outcomes before six months, we see that the slope and pace of recovery may be really steep, reflecting a high intensity of supportive services and therapies that may be in place. This recovery may wane and plateau over time as the intensity of supports dissipate. So how do we decide what to focus on in this sea of heterogeneity? Family and health care providers agree that post-hospital health-related quality of life and functional status are the most important outcomes to study. There is disagreement about all of the other outcomes. With this in mind, we ask clinicians, researchers, and family stakeholders to determine via a consensus process what core outcomes should be studied in PICU survivors. Studying these outcomes consistently will give us a greater understanding of how children fare across different aspects of health and over time. As we try to connect these seemingly disparate outcomes and develop core outcomes, we need to remember our why. Helping children thrive. There is potential for recovery. Nearly 10% of all survivors in our longitudinal cohort recovered. In a similar study that looked at children with newly acquired morbidity at discharge, more than half of these children recovered over time. How do we sustain this degree of improvement? Prevention is key. It's back to our ABCs in the ICU. The ICU liberation bundle with its attention to pain, both spontaneous awakening and breathing trials, careful choice of sedative and analgesia, treatment of delirium, early mobility, and family engagement are important. A threefold increase in independent functioning has been demonstrated among adult ICU survivors with use of the ICU liberation bundle. Results in pediatrics are in their infancy. ICU diaries help survivors and their families chronicle what happened during the ICU stay. In a meta-analysis, ICU diary use was associated with lower risk of depression and better quality of life among adult survivors. The potential impact on children is yet to be elucidated. Post-discharge interventions, including post-ICU clinics with multidisciplinary professional teams are important in terms of screening and identifying at-risk patients. These clinics can also provide symptom management, parental education, problem solving, supports, and resources. Patients also report success with expectation management and validation of progress in qualitative studies of adults receiving rehabilitation after ICU. The value of peer support groups through organizations like the Society of Critical Care Medicine's Thrive Initiative are also important in mitigating post-intensive care syndrome. Supports such as nurse counseling have promising results in reducing post-traumatic stress disorder. In sum, as we've seen today, it's not just critical illness, but survivorship that begins and ends outside of the ICU. When we look at the landscape of PICU survivorship, we have traded mortality for morbidity. Functional status varies widely, with 5-80% of PICU survivors experiencing deficits, depending on what outcomes we study, as well as when, how, and in whom we assess these outcomes. Intervention encompasses physical, cognitive, emotional, and social health, and health-related quality of life. Patient, diagnosis, and therapy-related risk factors affect outcomes. Using PICU and post-discharge interventions, we may be able to identify high-risk survivors and intervene to alter their survivorship trajectories. Together, we're creating a roadmap for improving PICU survivorship and functional outcomes. We're learning how to navigate the world outside of the ICU. Thank you. I'd like to thank SCCM for the opportunity to be here today.

Pediatric Intensive Care Unit

functional outcomes

survivorship

mortality rates

critical illness