207 Shores JT, Brandacher G, Lee WP Hand and upper extremity transplantation an update of outcomes in the worldwide experience Plast Reconstr Surg 2015;135(2) 351e 360e 208 Maurer MM, Sauer IM, Pratsc[.]
e6 207 Shores JT, Brandacher G, Lee WP Hand and upper extremity transplantation: an update of outcomes in the worldwide experience Plast Reconstr Surg 2015;135(2):351e-360e 208 Maurer MM, Sauer IM, Pratschke J, et al First healthy baby after deceased donor uterus transplantation: birth to a new era? Transplantation 2019;103:652-653 209 Guidance for Organ Procurement Programs (OPOs) for VCA Deceased Donor Authorization https://optn.transplant.hrsa.gov/resources/ guidance/opo-guidance-on-vca-deceased-donor-authorization/ e7 Abstract: Organ transplantation is the accepted therapy for endstage organ failure However, the national waitlist continues to increase because of a shortage of organ donors Organ donation is a process that includes (1) identification of a potential donor, (2) timely determination of neurologic death, (3) authorization for donation, (4) perioperative donor management, and (5) recovery of organs for transplantation Successful organ recovery requires a collaborative approach involving the critical care team, organ procurement organization, and other medical specialists Evolving areas in transplantation include vascularized composite allografts and use of donor organs from neonates, human immunodeficiency virus, and hepatitis-positive donors Key Words: pediatric, organ donation, brain death, circulatory death, transplantation 21 Long-Term Outcomes Following Critical Illness in Children ELIZABETH Y KILLIEN, JERRY J ZIMMERMAN, FRANÇOIS ASPESBERRO, AND R SCOTT WATSON • • Mortality reduction represented the first frontier for critical care medicine and historically has been the most commonly used outcome measure in interventional trials enrolling critically ill patients Fortunately, as the subspecialty of pediatric critical care has matured, overall mortality rates for critically ill children have substantially declined to current rates of 2% to 3% of all pediatric intensive care unit (PICU) admissions.1–3 Many children surviving critical illness, however, struggle to regain their prehospitalization health status, experiencing persistent deficits in functional status, health-related quality of life (HRQL), cognitive and school performance, and mental health They also experience high rates of hospital readmission, ongoing healthcare use, and late mortality Patients’ families also experience emotional, financial, and social strains, which, in turn, can make it more difficult for them to support the recovery of their children As increasing numbers of children are now surviving severe illnesses, pediatric critical care may be exchanging mortality for enduring morbidity.4,5 The next frontier for pediatric critical care medicine is to characterize the scope of long-term postdischarge morbidity, better identify the antecedents of morbidity and the survivors most at risk, and define potential targets for intervention to help optimize recovery from pediatric critical illness Post–Intensive Care Syndrome Children surviving critical illness and intensive care are vulnerable to ongoing problems in all domains of life (Table 21.1) Physical, emotional, cognitive, social, and family functioning may all be • • Development of specialized pediatric intensive care has contributed to substantially reduced mortality for critically ill children Research has identified physical, cognitive, health-related quality of life, and mental health domains as areas of persistent impairment among children surviving critical illness Postintensive care syndrome is the development of new or worsening impairments in physical, cognitive, or mental health • PEARLS arising after critical illness and persisting beyond acute care hospitalization Morbidity measures are increasingly being incorporated as primary and secondary endpoints in pediatric critical care interventional trials There is an urgent need for additional research to better characterize postintensive care morbidity and its risk factors, with the goal of minimizing adverse sequelae associated with critical illness affected to the detriment of overall HRQL and a family’s socioeconomic status In adult survivors of critical illness, an increasing appreciation for new morbidity persisting after discharge in multiple domains led to the development of the concept of post– intensive care syndrome (PICS) and post–intensive care syndrome family (PICS-F).6 More recently, this concept has been applied to children as pediatric PICS (PICS-p), with the notable difference from the PICS concept in adults being that childhood development and family are integral to a child’s recovery from illness (Fig 21.1).7,8 Health-Related Quality of Life HRQL is increasingly being used as a comprehensive measure of health outcomes9 and has been identified by both families and healthcare professionals as the most important outcome to assess among PICU survivors.10 Quality of life is defined as an individual’s perception of his or her position in life in relation to the individual’s goals, expectations, standards, and concerns.11,12 HRQL is defined as quality of life in which a dimension of personal judgment over one’s health and disease is added13,14; it encompasses the impact of health status on physical, mental, emotional, and social functioning.15,16 HRQL in children is influenced by factors such as the ability to participate in peer groups, keep up with developmentally appropriate activities, and succeed in school It provides a broad view of child health, encompassing aspects of perceived health, health behavior, and well-being.17–19 175 176 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal TABLE Domains of Health Outcomes and Examples of 21.1 Morbidity Following Pediatric ICU Discharge Domain Morbidity examples Health-related quality of life Unable to participate in activities Difficulty with self-care Low energy level Worrying or feeling sad Difficulty getting along with peers Memory or attention deficits Difficulty with schoolwork or missing school Functional/physical Cognitive Mental health Family Social Economic Baseline status Pediatric intensive care experience Motor dysfunction Impaired level of consciousness Feeding or respiratory support Hearing or vision deficits Neuromuscular weakness ICU-associated polyneuropathy Pain Physical health Executive function Processing speed Memory Attention Academic performance ICU, Intensive care unit Baseline HRQL is determined by genetics20; parent, family, and home characteristics21; and chronic, comorbid conditions (Fig 21.2).22,23 In assessing HRQL among a generalized sample of US children, lower HRQL was noted for children in lower socioeconomic status groups, those with healthcare access barriers, adolescents compared with children, and individuals with chronic medical conditions.19 These same variables likely impact HRQL recovery following critical illness in addition to the effects of acute illness and associated treatments Individual characteristics influencing HRQL include personality traits, chronic comorbid conditions, and genetics; environmental characteristics include parental stress, family dynamics, and home demographics; and clinical variables specific to critical illness include the intensity and duration of organ system dysfunction and exposure to ICU therapies.24 HRQL instruments should provide reliable and valid measures that can quickly and easily be used to quantify morbidity or disability Emotional health Social health Trajectory of recovery Family stress Mental health of family members Relationship conflict and divorce Disruption of siblings’ routines Costs of acute care Loss of income due to missed work or job loss Ongoing care needs Cognitive health • Family • Parents • Siblings Developmental impact Anxiety Depression Acute stress disorder Posttraumatic stress disorder Disturbed sleep patterns and nightmares Difficulty interacting with peers Missed school Family isolation Child Days to decades • Fig 21.1 Post–intensive care syndrome in pediatrics (PICS-p) The PICS-p conceptual framework incorporates the child’s baseline functioning, physical and psychosocial development, interdependence of family, integral aspects of social health, and potential trajectories of lifetime recovery (From Manning JC, Pinto NP, Rennick JE, Colville G, and Curley MAQ Conceptualizing postintensive care syndrome in children—The PICS-p framework Pediatr Crit Care Med 2018;19[4]:239–300.) after a child’s critical illness or injury These tools must be multidimensional and include physical, mental, and social health domains Preferably, HRQL questionnaires should be completed by the critically ill children if they are to years of age and older Parent-proxy reporting is often necessary in a critically ill population, however, and is also a valid approach.25 eTable 21.2 provides a list of HRQL measures that have been used in pediatric critical care studies and summarizes important psychometric properties of these tools.9 The most comprehensive instruments for assessing HRQL that are currently available are the PedsQL 4.0 Generic Core Scales, KIDSCREEN-27, the 28-item Child Health Questionnaire parent form (CHQ-PF28), and KINDL These tools are offered as both self-reports and proxy reports, cover a wide age range of children, are brief with a low response burden, are multidimensional, have been shown to have internal consistency and test-retest reliability, demonstrate sensitivity to change over time, and have content and construct validity CHAPTER 21 Long-Term Outcomes Following Critical Illness in Children Characteristics of the Individual Biological Variables • Genetics • Chronic Illness Characteristics of the Environment and Family Characteristics of Healthcare • Treatment • System (Access) • Organization (Staffing) Critical Illness Acute Insult • Pneumonia • Traumatic brain injury 177 Course of illness Organ function HRQL ICU Insult • Side effects of standard care • Iatrogenic complications Growth and development • Fig 21.2 Components that contribute to post–pediatric intensive care unit health-related quality of life (HRQL) HRQL after pediatric critical illness is affected by multiple factors In addition to a child’s psychologic, biological, and environmental characteristics, characteristics of the healthcare system and a child’s capacity for growth and development interact with the acute illness or injury and its evolution in a multidirectional manner For example, chronic illness can affect HRQL and a child’s family/environment, which, in turn, can influence the risk of subsequent episodes of critical illness (From Watson RS, Crow SS, Hartman ME, Lacroix J, Odetola FO Epidemiology and outcomes of pediatric multiple organ dysfunction syndrome [MODS] Pediatr Crit Care Med 2017;18[3 Suppl 1]:S4–S16.) Assessing Change From Baseline A common method of evaluating HRQL, functional status, and other outcomes is to compare patient scores to published population norms for the instrument There are limitations to this approach, however, as children’s baseline status may be either above or below the population mean Thus, a significant change in their health status from their own individual baseline may not be reflected in a comparison to population norms Therefore, the impact of critical illness will likely be underestimated for patients whose baseline status was above the population mean and experienced declines following their hospitalization and may be overestimated for patients whose baseline was below the population mean but did not decline further (Fig 21.3).26 In one study of HRQL outcomes among children with sepsis, only 69% of patients who had a clinically significant decline from their individual baseline HRQL score at the time of follow-up would have been identified as being below the population mean, while 34% of the patients who were significantly below the population mean at follow-up were not significantly below their individual baseline score.27 Additionally, the general population of children sampled to determine population norms may not be representative of the typical population of children experiencing critical illness Over half of the children admitted to US PICUs have complex chronic health conditions.28,29 These children experience higher illness severity, longer lengths of stay, higher inpatient mortality, and high frequency of morbidity following illness.22,28,30–37 One population-based sample of PICU patients found that years after an ICU admission, nearly 95% of patients with low HRQL at follow-up had chronic conditions—most commonly, neurologic diseases such as cerebral palsy and epilepsy, chromosomal abnormalities, and malignancies.38 Comparing their HRQL to the general pediatric population may not adequately reflect the trajectory of their HRQL after hospitalization, as their baseline HRQL scores may be substantially lower than the population mean Children with cerebral palsy, for example, have a mean baseline PedsQL score of 51.3 points,39 two standard deviations below the population mean.40 There is also an important subset of children requiring ICU care who experience improvement in health status after a hospitalization Patients with congenital heart disease and those who receive solid-organ transplants have higher rates of functional outcomes improvement than their healthy counterparts, most likely due to the resolution of chronic organ dysfunction following operative cardiac repair or organ transplantation Nearly half of children with elective PICU admissions experience HRQL improvement after discharge.41 Some children dependent on respiratory or feeding technology at baseline also experience improvement in functional status following an ICU stay.42 Many ... intensive care syndrome (PICS) and post–intensive care syndrome family (PICS-F).6 More recently, this concept has been applied to children as pediatric PICS (PICS-p), with the notable difference... compare patient scores to published population norms for the instrument There are limitations to this approach, however, as children’s baseline status may be either above or below the population