Transforming PICU Culture to Facilitate Early Rehabilitation

Abstract

Children who survive a critical illness are at risk of developing significant, long-lasting morbidities that may include neuromuscular weakness, cognitive impairments, and new mental health disorders. These morbidities, collectively known as post–intensive care syndrome (PICS), may lead to functional impairments, difficulty in school and social settings, and reduced quality of life. Interventions aimed at rehabilitation such as early mobilization, sedation minimization and prevention of ICU-acquired weakness, delirium, and posttraumatic stress disorder may lead to improved clinical outcomes and functional recovery in critically ill children. Acute rehabilitation is challenging to implement in a pediatric intensive care unit (PICU), and a culture change is needed to effect widespread transformation in this setting. Our objectives in this article are to review the evidence on PICS in children and strategies for affecting culture change to facilitate early rehabilitation in the PICU.

Introduction

There is an increasing need for pediatric intensive care services because of a changing spectrum of pediatric disease, technological advancements, and improved survival among extremely premature neonates and children with complex health conditions.^{1 2} The overwhelming majority of children admitted to a pediatric intensive care unit (PICU) in developed countries survive their critical illness.³ This decrease in mortality is unfortunately offset by an increase in morbidity among these patients.⁴

Critical illness is associated with a substantial burden on patients, their families, and society.⁵ Emerging evidence suggests that there are significant and persistent physical, cognitive, and psychiatric morbidities among adult and pediatric survivors of critical illness,^{6 7 8 9 10 11 12 13 14 15 16 17} known as post–intensive care syndrome (PICS).^{18 19} PICS adversely impacts patients resulting in reduced quality of life and functional impairments^{20 21 22} along with substantial societal costs.^{5 23} Increasing recognition of its adverse impact on long-term sequelae and functional outcomes has resulted in a wealth of research focused on preventing PICS and ICU-acquired morbidities. The majority of PICS research has been conducted in adults. While the research on the PICU population is currently limited, it is a growing area of study. In the sections that follow, we will review the evidence on PICU-acquired morbidities, followed by a discussion on strategies for affecting culture change to facilitate rehabilitation and improve functional recovery in critically ill children.

The Post–Intensive Care Syndrome in Children

ICU-acquired weakness: This is a common critical illness-acquired morbidity in adults, affecting 25 to 100% of ICU patients.^{24 25} It is a significant predictor of poor functional outcome in adults, recovery from which may take years.^{24 26} The true incidence of this condition is unclear in pediatrics due to the paucity of prospective evidence and possible underrecognition due to limitations in ascertainment. Manual muscle strength tests commonly used to screen ICU-acquired weakness in adults have limited feasibility and utility in the PICU because it is challenging to elicit full cooperation in children.²⁷ The reported incidence of PICU-acquired weakness from prospective studies varies from 1.7 to 30%.^{28 29} Its significance and impact on functional recovery and long-term outcomes remains unclear, and is a growing area of interest in critically ill children.³⁰

Neurocognitive morbidities: Children are at risk of significant cognitive morbidity after a critical illness, which may affect a variety of domains including attention and memory.³¹ Bronner et al demonstrated that 44% of pediatric septic shock survivors developed new cognitive impairments (scores < 25% percentile), which in turn negatively affected their academic performance.¹⁵ Additionally, 14% of the children required a new need for special education after recovering from their critical illness, with younger age being a risk factor. Children who developed cognitive impairments had lower quality-of-life scores and increased anxiety and depression compared with those who did not develop cognitive impairments.¹⁵ A retrospective analysis of a multicenter database found that PICU survivors developed new cognitive impairments and acquired global functional disability, as determined by the change in Pediatric Overall Category and Pediatric Cerebral Performance Category scores.³² The prevalence of new post-PICU global functional disability was 10.3% in children with normal cognition and 3l.4% children with cognitive impairments. Independent risk factors for global functional and cognitive disability were unscheduled PICU admission, trauma, neurologic or oncologic primary diagnoses, and severity of illness.³² Other studies have reported the rate of new functional disability to be higher in PICU survivors (32%) compared with children with normal cognitive function (20%).³³ Knoester et al reported that an alarming 69% of children suffer physical and neurocognitive sequelae 3 months after PICU discharge, half of whom acquired these morbidities as a direct result of their critical illness.³⁴

Significant cognitive impairments (memory, attention, and executive function) have been demonstrated in children 3 and 6 months after PICU discharge.³¹ These were associated with subsequent educational difficulties in 20% of patients compared with healthy controls, mirroring the findings in adult ICU survivors. Another study demonstrated that school-aged children with sepsis or meningoencephalitis exhibit significant cognitive impairments compared with nonseptic and nonneurologic PICU controls. The predictors of critical illness-acquired cognitive dysfunction are currently unclear, as studies to date have demonstrated conflicting results. Some suggest an association with severity of illness and PICU length of stay,³⁵ while others suggest younger age at admission and lower social economic status are the primary risk factors.^{36 37}

Mental health sequelae: Critical illness and PICU treatment can result in adverse psychological sequelae in children, which persist 1 year postdischarge.³⁸ Multiple adverse psychological and behavioral changes have been reported including increased anxiety and fears, sleep disturbances, and changes in social relationships.³⁸ Using the Children's Impact of Illness scale, Rennick et al identified three principal areas of psychological distress—the fear of recurrent illness, feelings that things have changed, and fear and anxiety about the hospitalization.³⁹ Pediatric survivors of septic shock experienced anxiety and depression after critical illness, with greater anxiety and depression occurring in the children who developed cognitive impairments.¹⁵ In a large prospective multicenter study, 25% of PICU survivors developed posttraumatic stress disorder (PTSD); a greater number of invasive procedures were the predictor of adverse psychological outcomes.⁴⁰ PTSD rates in children following admission to the PICU are variable ranging from 5 to 28%, with some studies reporting rates as high as 62%.⁴¹ A comparison of hospitalized critically ill children with noncritically ill children demonstrated that 21% of children admitted to the PICU developed PTSD, while none of the noncritically ill children who were admitted to the ward developed PTSD.⁴²

Quality of life: Current evidence suggests that 30 to 50% of PICU survivors experience substantial reductions in quality of life after PICU discharge, and this in turn results in significant morbidity such as persistent functional disability and considerable health care utilization that may persist for months and even years following PICU discharge.^{43 44} Physical domains are particularly affected, especially in sepsis patients.^{45 46} Identified risk factors for a reduced quality of life after a critical illness in children include preadmission health-related quality of life, trauma admissions,⁴⁷ neurological diagnoses, longer PICU length of stay, worse pediatric cerebral performance category score at baseline,¹⁶ and PTSD symptoms.⁴⁸

Caregiver burden: The PICU experience poses unique stressors to families, and a trajectory of parental stress can be observed.⁴⁹ Available evidence suggests that 10 to 14% of PICU survivors and parents develop mental health sequelae.⁵⁰ Parental PTSD following a child's admission to the PICU ranges from 10.5 to 21%, with symptoms of PTSD occurring in as high as 84%.⁴¹ These families are at significant risk for dysfunction.^{49 50}

Functional recovery: Physical, cognitive, and psychological morbidities can each affect a child's overall health and function, and their ability to recover from their critical illness.⁵¹ Factors that affect day-to-day function, health, quality of life, and what defines recovery are complex. There is increasing appreciation that the morbidities described earlier interact with and can affect a child's recovery after critical illness. A longitudinal study found that while pediatric mortality has decreased over the past three decades, significant residual disability in survivors has simultaneously increased substantially from 8.4 to 17.9%.³ A retrospective cohort substudy of the Researching Severe Sepsis and Organ Dysfunction in Children: A Global Perspective trial reported that 34% of children experienced a functional deterioration following their critical illness.⁵² Similarly, Pollack et al found that the prevalence of new morbidities at PICU discharge is twice the mortality rate.⁵³ A small, single-center study observed significant functional morbidity, 1 month after PICU discharge.¹⁶

In summary, there is evidence to suggest that PICS affects the pediatric population and their caregivers, in the form of physical, emotional, and neurocognitive morbidities that can persist long after a child leaves the PICU. The effect of critical illness on a child's overall function, quality of life, reintegration into the home and school setting, and their ability to recover provides a strong justification for implementing acute rehabilitation and preventative measures for acquired morbidities that may develop in the PICU setting.

A Need to Improve Outcomes

Surviving critical illness, intensive care treatment, and the development of PICS have been identified as the defining problems for critical care.⁵⁴ The recognition of PICS has resulted in significant growth of patient-centered outcomes research in critically ill adults.⁵⁵ The National Institute on Aging and the National Heart, Lung and Blood Institute^{56 57} along with academic medical societies^{19 58 59} identify PICS and its associated morbidities, poor functional outcomes, and reduced quality of life as crucial areas for research. The only effective intervention to date to improve physical function in critically ill patients is acute exercise-based rehabilitation.⁶⁰ In adult ICU populations, early mobilization has been found to be safe and feasible,^{61 62} reduce delirium and ventilator-free days, improve day-to-day functioning,^{63 64} and reduce hospital readmissions.⁶⁵ While acute rehabilitation is an expected part of critical care among adult ICUs,⁶⁶ its acceptance among PICUs is in its infancy. It is therefore imperative for the pediatric critical care community to identify effective methods for implementing early rehabilitation interventions on a unit-wide level. To do so requires a culture change.

Barriers to Early Mobility-Based Rehabilitation

The common notion that the treatment of critical illness ends at PICU discharge is no longer sufficient. Several real and perceived barriers to exercise and mobility-based rehabilitation in the critical setting have been identified including, but not limited to, time constraints (rehabilitation is time consuming), competing care needs and agendas,⁶⁷ lack of staffing to implement mobilization,⁶⁸ and lack of education and protocols for rehabilitation techniques.⁶⁹ Perhaps the most significant barriers are patient safety concerns.⁶⁹ Cardiovascular (i.e., tachycardia, hypotension, increased cardiac workload) and/or respiratory (i.e., oxygenation) compromise could occur while engaging in mobilization activities. Sedation regimens may need to be adjusted to optimize rehabilitation as this will facilitate increased consciousness and compliance in patients, but possibly lead to a decrease in the use of invasive medical devices. Additionally, risks include falls or injuries secondary to the activities performed and barriers related to equipment (i.e., ventilators, walkers, or lack of appropriate equipment).^{69 70} While concerns regarding adverse events associated with acute rehabilitation activities are often grounded in the best interest of the patient, the incidence of adverse events is very low at ≤4%.⁷¹

Culture Change in the ICU

The first step in a paradigm shift is to ensure there is supporting evidence for the care. Minimizing sedation, facilitating spontaneous breathing, delirium screening, and promoting mobility-based rehabilitation early during critical illness have been shown to be feasible and safe, improve patient important outcomes, and are therefore now recommended as practice priorities among adult ICUs.^{71 72 73} Adopting early rehabilitation in critically ill patients is dependent on the culture of the individual ICU and the beliefs of the clinical care providers, especially the ICU leaders.^{62 74 75} The evidence demonstrates that to affect change it is essential to develop an inclusive culture that has the buy-in of all of the critical care team members who are central to implementing acute rehabilitation.^{62 76} Key members of an acute rehabilitation and mobilization team may vary by institution but should include physical therapists and physicians who champion the cause, along with other ICU personnel including respiratory therapists, occupational therapists, and nursing or critical care assistants. Culture change is challenging; therefore, experts recommend thoroughly evaluating the local current practices and potential barriers prior to the development and implementation of a rehabilitation program. Key areas include the overall environment, staff attitudes, time and staff constraints, costs, and other practices that will affect the implementation of a rehabilitation program, such as sedation practices.^{62 74 76}

There are several ways to initiate a culture change. Langley et al proposed three important steps: (1) identify the goal or goals of the culture change, (2) identify what changes need to be made to reach the goal, and (3) what will be measured to determine if the goal is met.⁷⁷ A major first step to affect change is to establish a multidisciplinary team that works effectively together toward a common goal.

Hopkins et al used the eight stages of change described by Kotter^{78 79} to make changes in the respiratory ICU care processes which included reducing oversedation, increasing early physical activity, and enhancing sleep and airway protection.⁷⁴ Table 1 outlines the eight stages of change, the purpose of the change, and examples of how the changes were made. Over 6 years, the care process model in the respiratory ICU resulted in a reduction in the ICU length of stay by 3 days (13–10 days) and reduced tracheotomy rate and weaning failure from mechanical ventilation.⁷⁴ In addition, twice daily ambulation occurred in 88% of patients, and the patients ambulated for a median of 200 feet.⁷⁵ Thomsen et al evaluated adult patients before and after transfer to a respiratory ICU. An early mobilization process was advantageous and the ICU environment, specifically the clinical staff, was the strongest single predictor of early mobility and was more important than improvement in the patients' physiology (i.e., lower APACHE II scores).⁷⁵ A subsequent study found that while the majority of patients transferred out of an ICU to the ward were ambulating while they were in the ICU and had a physician order for physical rehabilitation and/ or mobility, physical activity decreased in 55% of patients on the first full day on the ward emphasizing the importance of the unit culture.⁷⁹

Table 1. Development of changes in care in the respiratory ICU at LDS Hospital⁷⁴ using the stages of change by Kotter⁷⁸ .

Stages of change	Purpose	Example
Establish a sense of urgency	Identify the problem and current care practices that contributed to the problem and promote practices to circumvent complications	Immobility, prolonged bed rest, and heavy sedation lead to physical deconditioning and create a care process that promoted physical rehabilitation including mobilization
Create a powerful guiding coalition	Change requires influential leaders who share a commitment to change	Guiding coalition including the nurse manager, physician director, and a small group of the most influential people committed to changing ICU care
Create a vision	Identify areas of care that need changing	Areas of care targeted including reducing oversedation, increasing physical rehabilitation and mobilization, improving sleep and airway protection
Communicate the vision	Identify who needs to know about the vision to get buy-in for care changes	Communication was carried to other areas of the hospital, other ICUs, clinicians, and unit staff
Empowering others to act on the vision	Hire or find staff that bought in and support the care changes	Cross-training staff and break down barriers regarding responsibility. Staff became more flexible, worked well with other clinical specialties
Planning for and creating short-term wins	Increase acute rehabilitation and mobilization	Data showing increased activity and reduced sedation were shared in steps, before reaching the ultimate goal
Consolidating improvements and producing still more change	Consolidating effort yielded marked improvement over the 24 mo of care process implementation	For example, nurses were expected to chart sleep in all ICU patients. This did not occur immediately but required several rounds of staff education, tracking and sharing charting compliance data. Over time there was a 95% compliance with charting sleep
Institutionalize new approaches	Developed and posted a goal grid for each targeted care process	Each staff member was part of one care process. The care process model for acute rehabilitation and mobilization has been exported to other ICUs in the institution and many centers around the world

A model example of successful cultural change comes from implementation of the awakening, breathing, coordination, delirium, and early mobility (ABCDE) bundle of care.⁸⁰ In the ICU Clinical Impact Interest Group study, each facility created a multidisciplinary team to implement the ABCDE bundle. Factors that facilitated implementation included (1) organizational or structural characteristics of the ICU, such as stable ICU leadership, and consistent staff from physical and respiratory therapy; (2) patient safety and quality improvement culture with more reliable implementation occurring in ICUs that had existing quality improvement cultures; (3) implementation planning including a clinical ICU champion to provide effective leadership; and (4) training and support including access to training materials and more hands-on training which resulted in faster implementation.⁸⁰

Not all changes occur as described earlier. For example, Morris et al developed a quality improvement project in which patients were assigned to either a usual care or a dedicated mobility team who used a mobility protocol.⁶² Of patients who were assigned to the mobility team, 73% received physical therapy compared with 6% in the usual care group. Patients assigned to the mobility team were out of bed 8.3 days earlier and had a shorter ICU length of stay (decreased 1.4 days) compared with patients in the usual care group.⁶²

Pediatric-Specific Challenges

In addition to the challenges that are presented by all critically ill populations, the pediatric population presents numerous unique challenges to implementing culture change. These include various barriers at the level of the patient, provider, institution, and knowledge translation. While most pediatric critical care clinicians support the notion of early rehabilitation, safety concerns, appropriate patient selection, inadequate knowledge, and the paucity of pediatric evidence are common barriers in critically ill children.⁸¹ Current evidence demonstrates that the majority of rehabilitation provided to critically ill children while they are in PICU is not focused on mobilization and functional rehabilitation, but on respiratory physiotherapy, which has not been demonstrated to improve clinical outcomes.^{1 82}

Safety: A major barrier to early mobilization is the notion that children who require cardiorespiratory support with invasive devices cannot be mobilized safely. There is now ample evidence in adults, and emerging evidence in children, that mobilization is feasible and safe in those receiving invasive mechanical ventilation, have invasive catheters in situ, are receiving continuous renal replacement therapy, and even extracorporeal membrane oxygenation support.^{83 84} Preliminary data in children challenge past perceptions that mobilization increases the risk of adverse physiologic responses. Choong et al were able to demonstrate in two pilot studies that mobilization is safe in pediatric patients and that intracranial pressure and stimulus-sensitive seizures do not increase with mobilization.⁸⁵

Patient population: The PICU population spans a broad range of physical and cognitive abilities. Up to 67% of children admitted to the PICU have a preexisting complex chronic condition, and 50% have abnormal baseline functional disability.^{1 86} Hence, baseline function and ability to comply with mobility interventions is extremely heterogeneous in the PICU. While the goal of mobilization in adults is often ambulation, this may not be a realistic or appropriate target for many PICU patients. Detailed physiotherapist assessments and mobility goals need to be individualized based on the patient's baseline function, developmental level, admission diagnosis, and prognosis.

Resources: The resources required to operationalize daily assessments and implement a mobilization plan can be challenging in the PICU. Physiotherapists are often a limited resource, and current evidence consistently reports a discrepancy between available resources and the rehabilitation needs of critically ill children.^{1 82} Many PICUs may not have the luxury of necessary pediatric-specific equipment (such as cycle ergometers) or dedicated personnel including trained physical, occupational, and speech therapists to support rehabilitation. To overcome these limitations, up to half of the rehabilitation interventions provided may therefore be executed by other personnel such as nurses, occupational therapists, respiratory therapists, and family members.⁸²

Knowledge: It is important to emphasize that mobility-based therapy should be individualized to the patient's needs with well-defined goals. Ideally, clear evidence-based guidelines outlining indications, contraindications, and safety considerations could guide clinicians and ensure that mobilization is executed in the safest and most effective patient-centered manner. While several guidelines exist for adults,^{70 87 88} there is unfortunately little prospective evidence to inform pediatric critical care practice at present. While the need to bridge this knowledge gap is frequently acknowledged,^{30 89} there are unique challenges inherent to conducting research in the pediatric population.⁹⁰ As with other areas of PICU practice where recommendations are not supported by high level of evidence, expert consensus opinion may inform the majority of the guidelines, while increasing research in this area may ultimately support and refine these guidelines.⁹¹ Once a guideline is created, development of an education curriculum that can be completed online or in the classroom setting may be beneficial on a unit-wide level for all staff.

Sedation culture: A detailed discussion about sedation approaches to promote early mobilization is provided in another article in this special issue. Briefly, to promote a culture of mobilization it is essential that the culture of sedation is modified concurrently. Optimizing analgesia and minimizing sedation to keep children awake and alert during the day and promote normal sleep–wake cycles is the gold standard. Although some level of sedation may be needed to maintain safety, particularly in very young children and infants who do not understand the need for interventions, goal-directed sedation using validated tools can prevent oversedation and delirium.^{92 93} Maintaining an alert state during the day will facilitate a child's active participation in rehab activities, and also increases parent satisfaction, provided that the child is comfortable.

Family involvement: An appreciation of the parents' experience that allows for a collaborative approach to patient care leads to improved family-centered care.⁹⁴ We are often dependent on family members and bedside caregivers to provide input on aspects of their child's care. Their input includes an experienced perspective on the patient's level of comfort, facilitation of communication, providing comfort measures, and actively participating in aspects of their child's care, including physical therapy and mobilization interventions. More than half of the children admitted to a PICU have an underlying chronic condition, and there is currently a clear discrepancy between the needs of these children and resources available to provide rehabilitation.^{1 82} Family members are already providing acute rehabilitation in the PICU setting,⁸² and as they are often more knowledgeable about their child's needs and tolerance, they are an important resource to facilitate rehabilitation in the PICU.

Establishing champions: Culture change in the PICU requires champions who promote early mobilization in children and empower bedside staff. It is imperative that pediatric critical care providers not remain paralyzed by the historic paradigm of bedrest and immobilization. This is especially true as emerging evidence suggests that sedation minimization can be a safe approach in children.⁹⁵ The success of implementation of any rehabilitation program requires the investment of a multidisciplinary group of champions who will pioneer and persist through the early phases of initiation, through to the patient transfer to the ward. Establishing a PICU rehabilitation committee to establish safe clinical practice guidelines individualized for that unit, identify barriers and current knowledge base of staff, and promote culture change is essential. In the PICU, these include physicians, senior nurses, physical therapists, occupational therapists, respiratory therapists, dietitians, child-life specialists, and outpatient rehab providers who will be caring for these patients after discharge. It is crucial for this committee to meet regularly and consistently to ensure momentum, quality of care, knowledge dissemination and feedback from stakeholders, and maintain enthusiasm and investment of their PICU members for this important initiative. As the initiative progresses and unit-specific guidelines are implemented, it is important to gather feedback on the uptake, feasibility, resource utilization, and its acceptability to patients and families, in the spirit of patient engagement and family-centered care. The importance of rehabilitation champions becomes even more significant after the rollout of the initiative to ensure that new culture becomes the accepted PICU paradigm.

Post-PICU Follow-up

Neonatal follow-up clinics have a long history of success, and adult post-ICU follow-up clinics are emerging as not only important form of support for patients and families but also as a way to facilitate rehabilitation and to improve outcomes.⁹⁶ As we garner more evidence on how and when to rehabilitate critically ill children, we can determine children and families who may be at risk for PICS and in whom follow-up and ongoing rehabilitation and support beyond the PICU is essential to optimal functional outcomes.

Conclusion

Physical and functional disability, cognitive impairments, and new mental health disorders are common and important sequelae that can affect children who have survived a critical illness, and result in poor recovery and quality of life, long after they have left the PICU. A bundled approach to acute PICU-based physical rehabilitation that includes sedation minimization and early mobilization are gaining clinical acceptance, but further study of its safety and efficacy with respect to appropriate timing, frequency, and nature of mobilization interventions in critically ill children is needed. To more widely and effectively implement early mobility, culture change is needed. Culture change requires appropriate knowledge dissemination of research evidence, education of clinical team members, development and implementation of pediatric early mobility and sedation minimization protocols that ensure patient safety, and champions to empower and affect a paradigm shift.