Family-centered care is a common care delivery model in pediatric hospitals. To be truly effective, this care must be conceptualized to include recovery after the pediatric intensive care unit (PICU) stay for children and families. Using survey methodology, we sought to identify the child- and family-related outcomes that were most valued by parents of critically ill children. Our goal was to integrate and prioritize approaches to assess and improve these outcomes in clinical practice.1,2Little evidence about post–intensive care syndrome (PICS) in pediatrics is currently available. Researchers frequently assess in-hospital mortality rates, but given that survival is common among critically ill children, morbidity also deserves examination.3 Since morbidity following critical illness affects child and family functioning, an increased and deliberate emphasis on family-centered care and the whole child across the critical illness trajectory is needed; this includes life following discharge to home.A focus on newly acquired child and family morbidities (eg, physical, cognitive, emotional, and social health; health-related quality of life) following hospitalization in the PICU is emerging as a priority.3–9 Data show that proactive and early screening may lead to improved functional outcomes for children following critical illness.9 No validated screening tools are currently available, but pediatric intensivists, nurses, and advanced practice nurses use clinical judgment, apply unit protocols, and consult colleagues such as physical therapists to assess and treat inpatients. Key evidence gaps exist related to optimal criteria to initiate rehabilitation services in the PICU and inclusion of parents’ views on PICU rehabilitation and outcomes.The importance of including patients and families in the development of clinical programs or the design of research studies has been increasingly recognized.10,11 For example, efforts are underway to create core outcome domains and measurement sets developed by patient, family, clinical, research, and funding stakeholders to ensure inclusion of high-value outcomes in future research programs for adults with acute lung injury.12,13 We sought to ask families about outcomes most important to them for their critically ill child’s recovery.The University of Pittsburgh, Office of Human Protections deemed this study exempt. Parents of children admitted to the PICU and the pediatric cardiac intensive care unit at the University of Pittsburgh Medical Center, Children’s Hospital of Pittsburgh were recruited during 7 consecutive days. A research study coordinator introduced the survey to parents who by completion indicated their consent to participate.We developed the survey for the study (see Table) on the basis of the International Classification of Functioning, Disability and Health: Children & Youth Version and consensus recommendations from content experts related to common outcome measures in pediatric traumatic brain injury research.14,15 We included the 10 outcome domains in the survey because each is measurable via validated and accepted clinical tools and because each is potentially modifiable with intervention. For example, a child’s emotional health can be measured using the Child Behavior Checklist, a widely used measure to screen for emotional health problems.16 Family quality of life can be assessed using the McMaster Family Assessment Device, a tool that is used to examine specific components of family functioning, including affective behaviors, communication, and problem solving.17 One parent/guardian per child (N = 35) ranked 4 of 10 priority outcome domains in order of importance. We descriptively analyzed survey data.Seven of 10 domains were ranked as 1 (most important) at least once by participants (see Figure). The domains most frequently ranked as 1 included the following: child’s emotional health (n = 10 [29%]), family’s quality of life together (n = 8 [23%]), and child’s ability to manage age-appropriate daily living skills and child’s physical functioning (n = 5 [14%] each). None of the participants rated the following domains as 1: family’s communication quality, family’s ability to meet financial obligations, and family’s ability to perform important tasks at home. One parent did not rank outcome domains and stated that survival was the sole outcome of importance. The Figure displays rankings across domains. While some domains such as child communication and social skills had fewer 1 rankings, they had a high frequency of 2 to 4 rankings.There is an increasing mandate for research to address child and family-centered outcomes in pediatric critical care.2,18–21 In this exploratory study, we investigated what outcomes were most important to parents/guardians of PICU patients as an initial step toward integrating those outcomes into clinical and research programs.A key finding in this study was the variation of rankings. No domain was rated 1 by more than one-third of participants. This finding may reflect that the outcomes presented in the survey often interact to affect overall functioning at home, school, and work. For example, in a study of parents of children with neurological disabilities, outcome domains were regarded to be highly interrelated rather than as independent constructs22; this view reflects the World Health Organization’s Classification of Functioning, Disability and Health: Children & Youth Version.14Nevertheless, participants more frequently prioritized certain outcome domains and considered their children’s emotional health to be highly important. Accordingly, research results indicate that a substantial number of children and families display signs and symptoms of psychological morbidities related to the PICU, including posttraumatic stress disorder (PTSD), depression, and anxiety.23 In a prospective study of previously healthy children discharged from the PICUs of 2 centers, 34% of parents reported symptoms of PTSD in their children, 38% of children were at risk for fatigue disorder, and 80% were at risk for sleep disturbance.5 Evidence suggests that psychological morbidity following PICU admission is treatable, and individuals at highest risk can be identified via screening procedures at or shortly after discharge. In a systematic review of interventions targeting child and parent psychopathology following PICU admission that included 3 randomized, controlled trials, Baker and Gled-hill24 found evidence that parent and child psychopathology could be reduced through education, screening before discharge, parent support after discharge, and specific interventions to target PTSD. Results of a pilot trial suggested that emotional health interventions may be more successful in families found to be at high-risk using a screening instrument administered at discharge.25Family quality of life, which is often disrupted by pediatric critical illness, was also frequently a top priority for our participants. Family members of patients with critical illness often experience post–intensive care syndrome–family (PICS-F), which includes emotional health issues such as anxiety, depression, and post-traumatic stress.9,26 Female gender, single parent status, lower educational achievement, and preexisting psychiatric diagnosis were identified as risk factors for increased family stress.24 In addition to evidence-based interventions to target parent psychopathology, empowering the patient and parents and addressing needs and deficiencies identified by parents may improve family outcomes.27 Implementing models for the delivery of family-centered care and developing post–intensive care unit clinics may also ameliorate the burden of PICS-F.1,28,29 These results underscore the importance of screening critically ill children and their families for psychological and emotional difficulties, providing evidence-based interventions, and integrating measures of these constructs into future clinical and research programs.Child physical function and activities of daily living were also prioritized by participants. Early mobility programs have improved patient-centered outcomes in critically ill adults, including faster return to independence in activities of daily living, shorter stays, decreased need for sedation, and less time dependent on ventilation.30,31 In a study using the Virtual-PICU database, researchers found that children with conditions placing them at increased risk of mortality including primary diagnosis categories (eg, neurologic, trauma, oncologic) and need for invasive mechanical ventilation and extra-corporeal therapies were at highest risk for functional and cognitive disability.32 Scarce high-quality evidence exists to inform guidelines for physical, occupational, speech, and other rehabilitation interventions in the PICU. Observational studies have demonstrated considerable variation in practice and attitudes regarding the provision of intensive care unit– based rehabilitation,33–36 which likely results in underutilization that may affect recovery. The feasibility and safety of PICU rehabilitation programs are being tested in quality assurance, interventional pilot trials,37,38 and in a randomized, controlled trial in children who require neurocritical care.39 Important questions remain, including how to apply screening tools to determine children at risk for disabilities, best timing and dose for interventions, and overall efficacy of interventions.Although our work is suitable for a pilot study, we acknowledge that our sample size was small. We did not discern from our survey data or from our interactions with participants that literacy was a barrier to survey completion. We did not take steps to ensure an appropriate reading level, but a member of the research team was present to answer questions during survey completion. A convenience sample was another limitation that may have affected our results. Children of the participants had different diseases, different severities of illness, and participants were polled during 1 week. We did not collect data to indicate if the children were in the early, middle, or recovery phases of their critical illnesses. Timing can affect priority rankings. For example, family financial difficulties may become a higher priority over time. In addition, behavioral problems are common after PICU admission, but they may not become apparent until the child resumes school and other activities; therefore, these problems are less concerning in the acute illness period.40 Finally, we did not explicitly ask participants to add new outcomes of importance to the survey and to rank them. Indeed, 1 parent expressed challenges with prioritizing our outcomes and stated that her sole focus was survival.Although our findings should be further explored and validated in a larger, prospective study, we believe that they support the active inclusion of children and families in clinical discussions and research planning regarding expected outcomes, morbidity assessment, and recovery planning following critical illness. At our institution, we created weekly, multidisciplinary rounds (Whole Child Rounds) to address current needs and risk of PICS-F and coordinate care across inpatient and outpatient populations. During these rounds, care providers integrate child and family discussions into their recommendations. Sessions are documented in customized summary notes in the electronic medical record.A cohort of parents/guardians identified outcomes that were important to them following the critical illnesses of their children. Participants most frequently ranked the following 4 outcome domains as the highest priority: child’s emotional health, family’s quality of life together, child’s physical functioning, and child’s ability to manage age-appropriate daily living skills. The wide variation in responses from participants suggests a need to assess parents’ priorities during the PICU stay. The traditional notion that discharge begins on the day of admission holds true for parents, and providing family-centered care requires an understanding of the individual priorities of parents and guardians. As key members of the critical care, multidisciplinary team, it is incumbent upon advanced practice nurses, bedside nurses, and physicians to lead the assessment of parents’ expectations after their children’s critical illnesses and to pioneer interventional research to improve outcomes.The authors are grateful to the pediatric intensive care unit patients, families, and staff for their generous efforts to help improve the outcomes of children with critical illnesses. Thank you to Pam Rubin, RN, for her excellent work as a study coordinator.