Improving Long-Term Outcomes for Pediatric Patients

2015 - 4 August – Post-Intensive Care Syndrome
Francois Aspesberro, MD; Carley Riley, MD, MPP, MHS; Melani Kitagawa, MD; Jerry Zimmerman, MD, PhD, FCCM
This article advocates the importance of treating PICU patients with long-term quality of life for both the patients and families.
The Next Frontier of Pediatric Critical Care: Mitigating Morbidity
The implications of critical illness neither begin nor end with the intensive care unit (ICU); intensivists must be invested in long-term outcomes for their patients. Maximizing long-term outcomes is an important goal. In this article, we examine the morbidity burden of children surviving critical illness and offer recommendations on improving long-term outcomes.
Mortality reduction was the first frontier of critical care medicine, and the mortality rate remains the most commonly used measure of outcome. During the past decades, these rates have decreased substantially among critically ill children. Virtual PICU Systems (VPS), a U.S. national pediatric critical care database, documents an overall pediatric intensive care unit (PICU) mortality rate of 3% for patients admitted to PICUs between 2005 and 2008.(1) Because the majority of our patient population survives the PICU stay, intensivists must consider and invest in outcomes beyond mortality.
Recent publications suggest that pediatric critical care may have exchanged decreased mortality for increased morbidity, with children struggling to perform at their premorbid levels after a PICU stay. (2,3) This suggests that the post-intensive care syndrome (PICS),(4) described in adults, occurs in this vulnerable population of children. (See Figure 1.) Recent research has identified physical, cognitive and mental health domains as the major sources of impairment in survivors of critical illness. (See Table 1.) The incidence of PICS in children remains unknown.
Health-related quality of life (HRQOL) and functional status represent clinically meaningful outcome measures for children surviving critical illness. Validated pediatric HRQOL instruments are now available to the pediatric intensivist. These tools should be used in research that examines how we can maximize HRQOL among children surviving critical illness.(5)

A Path to Improving Long-Term Outcomes for PICU Survivors
As pediatric critical care medicine begins to tackle long-term outcomes for our patients, we must create an infrastructure to better understand and optimize outcomes through clinical practice, research and advocacy.
In our clinical practice, we must actively acknowledge and address long-term physical, cognitive and mental health outcomes for our patients. We should provide information on what is known, including information about PICS and what survivorship may entail, while acknowledging what is still unknown. These discussions should involve all caregivers, especially those who provide care outside the ICU, including patients and families.
To better understand and optimize long-term outcomes, we must engage in clinical research in these areas. Follow-up programs are urgently needed to study the morbidity burden after critical illness as a prelude to novel interventions aimed at maximizing long-term outcomes. 
Research studies of PICU survivors must include well-designed, prospective longitudinal studies with serial assessments that allow us to:


  • Identify PICU survivors most at risk
  • Characterize long-term outcomes
  • Generate recovery curves for various illnesses
  • Identify factors associated with long-term morbidity and recovery
  • Define potential targets for intervention 
Such research should include information about the ICU course, as well as surrounding events such as preexisting comorbidities and environmental characteristics.
With such goals in mind, the Society of Critical Care Medicine has developed the ICU Liberation Initiative, which aims to create effective, interprofessional teams that partner with patients and families to improve the “usual care” of critically ill patients.6  Pediatric ICUs need to be part of this novel intervention to improve long-term outcomes for critically ill children.
Research has begun to identify and investigate potential targets for intervention:
  • Introduction of early, aggressive physical therapy and passive range of motion in the ICU to reduce ICU neuromyopathy
  • Better understanding of how disordered sleep affects cognitive and psychiatric sequelae of critical illness
  • Examination of how the pharmacologic milieu encountered during critical illness influences cognitive outcomes later
  • Exploration of how interventions, such as memory books and journals kept by family members, may facilitate reintegration into life after critical illness
Efforts to improve long-term outcomes for our patients must address physical, cognitive and mental health. Cognitive and psychological impairments are prominent and important features of PICS,(7) yet we have only begun to examine these longer-term mental health outcomes for PICU patients:
  • Depression after a critical illness is associated with HRQOL deficits, and reliable diagnosis and efficacious treatments for depression are available.
  • Preliminary evidence in adults suggests that reduction in posttraumatic stress disorder (PTSD) symptoms may be associated with improvements in HRQOL.
  • PICU survivors may experience delusional memories after intensive care treatment.
  • PICU survivors more often experience below-average performance in school than their healthy counterparts.(8)
It is important to inform families of the potential cognitive and psychological difficulties that their children face during recovery. The teams caring for our patients after their ICU stays should understand these potential difficulties. Psychological support may improve outcomes for children and parents. Further research is essential to establish the timing, extent and type of psychological support that is best to support these children and their families.

Remembering the Burden on Caregivers and Families of PICU Survivors
Critical illness and its outcomes affect not only our patients but also their families; consequently, we must also care for the families. Importantly, PICS is not limited to patients. The families and caregivers of PICU survivors have an increased risk of mental health disorders, such as anxiety, depression and PTSD.(9) Caring for a child who has new or worsened morbidities after a PICU stay may result in strain on relationships, increased anxiety and depression, and distress about caring for other children.(9-11) These struggles are magnified if the caregiver is a single parent or has limited financial resources.(10,11) Risk factors for increased caregiver burden in adult ICU survivors include being female, living with the care recipient, and lacking a choice in being a caregiver.(12) Families of PICU survivors likely have similar risks for increased caregiver burden. As we begin to address long-term outcomes for our patients, we also need to address long-term outcomes for their families. There is a need to understand the risk factors of increased caregiver burden and worsened family dynamics that PICU survivor families face so that we can then begin to find appropriate support and care for these families.
A “good save” is no longer good enough.(13) Pediatric intensivists need to look beyond the doors of the PICU and hospital, because maximizing quality of life should ultimately be our most important goal.



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12. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden. JAMA. 2014 Mar 12;311(10):1052-1060.
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