181CHAPTER 21 Long Term Outcomes Following Critical Illness in Children of organ dysfunction were highly associated with this composite poor outcome 136 Pediatric critical care clinical trialists clea[.]
CHAPTER 21 Long-Term Outcomes Following Critical Illness in Children 181 TABLE Comparison of Estimated Sample Sizes for Interventional Trial for Septic Shock Using Mortality vs Composite 21.3 Poor Outcome (Death or Severe HRQL Impairment at 28 Days) as Primary Outcome Measure Outcome Measure All-cause mortality Poor outcome Baseline Occurrence (%) 25% Treatment Effect Treatment Occurrence (%) Subjects per Treatment Group 8.0 2.0% reduction 6.0 3419 35.0 8.5% reduction 26.5 618 Two-sided test, a 05 and power 90, outcomes assessed at 28 days HRQL, Health-related quality of life of organ dysfunction were highly associated with this composite poor outcome.136 Pediatric critical care clinical trialists clearly recognize that mortality no longer tells the complete story of outcomes for critically ill children In addition, mortality is increasingly not logistically feasible as an endpoint for interventional trials from the standpoint of study power For example, current 28-day mortality for pediatric septic shock is approximately 8%, but death or persistent, severe HRQL disability (poor outcome) occurs in roughly 35% of patients As summarized in Table 21.3, a marked difference in patient enrollment numbers would be required for a hypothetical sepsis interventional trial employing these two patient-centered clinically meaningful endpoints Strategies to Assess Long-Term Outcomes Strategies to Improve Follow-up For longitudinal studies, use of a variety of strategies results in the greatest subject retention Accordingly, a Cohort Retention Toolbox has been developed and is available free of charge online.137 This website provides several relevant resources, such as participant contact information forms, follow-up protocols, strategies for locating participants, retention strategies, communication templates and manuals, and materials for follow-up staff training Including monetary incentives, keeping questionnaires short, and contacting people before questionnaires are sent represent key practices for maintaining research subject retention and participation.138 A systematic review and metaanalysis addressing this question demonstrated the importance of monetary incentives after collection of the data.139 A recent article summarized methods for collecting follow-up information from parents 12 months following their child’s emergency admission to the PICU.140 Of the 218 parents participating in this study, 47% chose to complete questionnaires online (77% completion rate), 42% chose to complete postal questionnaires (48% completion rate), and 11% chose to complete questionnaires by telephone interview (44% completion rate) The authors emphasized the importance of a priori identifying parental preferences for longitudinal contact and study participation A final strategy for maintaining patient and family engagement in long-term follow-up is to include a qualitative study aim This approach generates insight into the patient and family’s personal experience of the onset and treatment, as well as recovery, and lasting effects of critical illness.141 Qualitative data extend far beyond any validated survey information, add considerable richness to outcome results, and probably should be a required aspect of any clinical trial Follow-up Programs for Intensive Care Unit Survivors Aside from recommendations from the Pediatric Acute Lung Injury Consensus Conference for the care of children who have recovered from pediatric ARDS,142 there is currently no other specific guidance in place for follow-up of survivors of pediatric critical illness A recent survey of pediatric critical care medicine physicians found that very few programs routinely measure longterm functional or HRQL outcomes among PICU survivors, but most physicians believe it should occur.143 One example of routine outcome measurement is the Outcomes Assessment Program at Seattle Children’s Hospital, which was developed in 2010 to measure patient- and family-centered outcomes for hospital inpatients Families and patients were asked at the time of hospital admission to report baseline HRQL and HRQL status at the time of admission; they were then resurveyed to 12 weeks after hospital discharge These data have been used in multiple research studies assessing change in HRQL for both ward and PICU patients.27,58,144 Another approach to assessing and potentially treating longterm impairments after critical care is to conduct in-person assessments with patients and families in follow-up clinics In 2011, the Indiana University School of Medicine opened one of the first collaborative care clinics in the United States aimed at meeting the recovery needs of adult ICU survivors, with a mission to maximize the cognitive, physical, and psychologic recovery of ICU survivors via patient and caregiver needs assessment and a follow-up visit that includes a family conference.145 Intensive care follow-up clinics have become increasingly common in adult critical care146,147 and neonatal intensive care.148 Interest in the development of pediatric-specific critical care follow-up clinics is increasing, though their effectiveness has not yet been determined, and to date, most clinics are focused on follow-up after pediatric neurocritical care.149–151 Other Initiatives The Society of Critical Care Medicine’s THRIVE initiative provides resources and education for patients and families surviving critical illness who may be affected by various aspects of PICS.6,152 The THRIVE Collaborative program offers education, resources, and community to assist patients and families after intensive care and hospitalization Currently, THRIVE focuses on peer support groups153 and postintensive care recovery clinics.154 Through the Collaborative Pediatric Critical Care Research Network, the National Institute of Child Health and Human Development is currently supporting a consensus effort to provide recommendations for a set of core outcome measures to be used to study 182 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal postdischarge outcomes after pediatric critical illness, which will be informed by a scoping review of studies of postdischarge outcomes of pediatric critical illness being conducted by the Pediatric Acute Lung Injury and Sepsis Investigators Long-Term Outcomes Subgroup Potential Targets for Interventions Many adverse sequelae of critical illness and critical care may be amenable to intervention Acute loss of skeletal muscle mass contributes to ongoing physical disability common among survivors of critical illness.155,156 Early and more aggressive physical therapy and passive range of motion introduced in the ICU may reduce ICU neuropathy and other musculoskeletal complications, but the ability to stratify risks and tailor programs to individual needs requires further study There is substantial interest in developing PICU-based rehabilitation programs, though pediatric critical care providers have concerns regarding barriers to implementation.143 Early mobilization programs, such as “PICU Up!,” are now being developed and have been found to be feasible to implement.157 Larger-scale studies are evaluating the impact of such programs Another active area of research is how improvement in sleep quality and avoidance of delirium may improve outcomes among survivors As sleep is known to be severely disturbed in the hospital, interventions that improve the quality of sleep may reduce cognitive and psychiatric sequelae.158,159 Delusional memories are reported by almost a third of children surviving critical illness These can be exacerbated by exposure to opiates and benzodiazepines, and they are associated with an increased risk of PTSD.66 Interventions such as ICU diaries and journals kept by family members may facilitate reintegration into life after critical illness and are well received by families in the PICU.160–165 Psychologic impairments such as depression are prominent and important features of PICS-p and affect both patients and families.166 Accordingly, psychologic support may improve outcomes in both children and parents Further research is essential to establish the optimal timing, extent, and type of psychologic support for these children and families Conclusion Critical care practitioners are classically trained in resuscitation science that is detailed throughout this textbook This expertise has led to a marked decrease in mortality associated with childhood critical injury and illness There is now a greater recognition that critical care begins and ends outside the walls of the ICU Intensivists and their care-provider colleagues are increasingly aware of the impact of genetics, family dynamics, home environment, and preexisting comorbidities on the intensity, duration, and recovery from critical illness With maturation of the field, pediatric critical care practitioners now have the opportunity as well as the obligation to look beyond PICU discharge to minimize not only mortality but also the burden of long-term morbidity in accordance with patients’ and families’ values Widespread agreement exists in the pediatric critical care community that research is urgently needed to better characterize postdischarge morbidity and understand how to optimize longterm outcomes.7,8,125,167,168 Pediatric intensivists must lead the effort to better understand and optimize long-term outcomes through clinical practice, research, and advocacy All pediatric critical care practitioners should actively acknowledge and address the long-term physical, cognitive, and mental health impact of critical care on their patients Ultimately, maximizing long-term functional status and HRQL should be the most important goals of critical care medicine Key References Choong K, Fraser D, Al-Harbi S, et al Functional recovery in critically ill children, the “WeeCover” multicenter study Pediatr Crit Care Med 2018;19(2):145-154 Colville G, Kerry S, Pierce C Children’s factual and delusional memories of intensive care Am J Respir Crit Care Med 2008;177(9):976-982 Colville G, Pierce C Patterns of post-traumatic stress symptoms in families after paediatric intensive care Intensive Care Med 2012;38(9): 1523-1531 Czaja AS, Zimmerman JJ, Nathens AB Readmission and late mortality after pediatric severe sepsis Pediatrics 2009;123(3):849-857 Manning JC, Pinto NP, Rennick JE, Colville G, Curley MAQ Conceptualizing post intensive care syndrome in children-the PICS-p framework Pediatr Crit Care Med 2018;19(4):298-300 Merritt C, Menon K, Agus MSD, et al Beyond survival: pediatric critical care interventional trial outcome measure preferences of families and healthcare professionals Pediatr Crit Care Med 2018;19(2): e105-e111 Pollack MM, Holubkov R, Glass P, et al Functional status scale: new pediatric outcome measure Pediatrics 2009;124(1):e18-28 Quasney MW, López-Fernández YM, Santschi M, Watson RS, for the Pediatric Acute Lung Injury Consensus Conference Group The 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117(4):e663-674 116 Aaro Jonsson CC, Emanuelson IM, Charlotte Smedler A Variability in quality of life 13 years after traumatic brain injury in childhood Int J Rehabil Res 2014;37(4):317-322 117 Brown EA, Kenardy J, Chandler B, Anderson V, McKinlay L, Le Brocque R Parent-reported health-related quality of life in children with traumatic brain injury: a prospective study J Pediatr Psychol 2016;41(2):244-255 118 Yu YR, Carpenter JL, DeMello AS, et al Evaluating quality of life of extracorporeal membrane oxygenation survivors using the pediatric quality of life inventory survey J Pediatr Surg 2018; 53(5):1060-1064 119 Cashen K, Reeder R, Dalton HJ, et al Functional status of neonatal and pediatric patients after extracorporeal membrane oxygenation Pediatr Crit Care Med 2017;18(6):561-570 120 Di Leo V, Biban P, Mercolini F, et al The quality of life in extracorporeal life support survivors: single-center experience of a long-term follow-up Childs Nerv Syst 2019;35(2):227-235 121 Elias MD, Achuff BJ, Ittenbach RF, et al Long-term outcomes of pediatric cardiac patients supported by extracorporeal membrane oxygenation Pediatr Crit Care Med 2017;18(8):787-794 122 Torres-Andres F, Fink EL, Bell MJ, Sharma MS, Yablonsky EJ, Sanchez-de-Toledo J Survival and long-term functional outcomes for children with cardiac arrest treated with extracorporeal cardiopulmonary resuscitation Pediatr Crit Care Med 2018;19(5):451458 123 Menon K, McNally JD, Zimmerman JJ, et al Primary outcome measures in pediatric septic shock trials: a systematic review Pediatr Crit Care Med 2017;18(3):e146-e154 124 Yehya N, Thomas NJ Relevant Outcomes in pediatric acute respiratory distress syndrome studies Front Pediatr 2016;4:51 125 Heneghan JA, Pollack MM Morbidity: changing the outcome paradigm for pediatric critical care Pediatr Clin North Am 2017; 64(5):1147-1165 ... practitioners are classically trained in resuscitation science that is detailed throughout this textbook This expertise has led to a marked decrease in mortality associated with childhood critical... reduce cognitive and psychiatric sequelae.158,159 Delusional memories are reported by almost a third of children surviving critical illness These can be exacerbated by exposure to opiates and... pediatric respiratory failure Am J Respir Crit Care Med 2019;200(7):900-909 The full reference list for this chapter is available atExpertConsult.com e1 References Epstein D, Wong CF, Khemani RG, et