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icu saves kids' lives, but problems persist
leaving the intensive care unit doesn't always result in the fairy-tale ending parents hope for.
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three years ago, three-month-old nathan todt started to struggle to breathe in the middle of a cold november day. within 24 hours, he was admitted to a pediatric intensive care unit (picu) in ontario with a mechanical ventilator doing the breathing for him. two weeks later, when the breathing tube was removed and nathan was discharged to the inpatient ward, his parents thought that the worst was over. in fact, it was only the beginning.
“he had regressed a lot in his development,” says nathan’s mother, ashley todt. “he didn’t seem to have any head control, his tone was low and he wasn’t interacting with his environment the way he used to. there were nights at home when he was inconsolable. everything was different.”
nathan, who had developed respiratory failure secondary to a common virus, spent his entire third month of life in the picu. his time there was tumultuous. there were multiple attempts to remove his breathing tube, which failed because nathan wasn’t ready to breathe on his own.
“i thought that once he was out of the picu we were out of the woods,” todt remembers. “i thought everything would fall back into place. but he almost had to re-learn normal baby things.”
nathan was nine months old before he could sit up on his own and took his first step almost a full year after he started crawling. he is now three years old and while he doesn’t need physiotherapy anymore, he still receives support from an occupational therapist for fine motor skills and speech therapy for communication. a bright and mischievous toddler, he continues to make remarkable gains — but todt still wonders how nathan’s critical illness affected him.
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“infant months are so key for development,” says todt. “i think being critically ill made a huge difference in his developmental trajectory.”
nathan’s story illustrates what thousands of families realize after their child survives critical illness: leaving the picu is not the fairytale ending they initially anticipate.
nathan’s new and persistent impairments in physical, psychological, cognitive and social functioning after critical illness is what experts now call pediatric post-icu syndrome (pics-p). these impairments can persist for months to years after critical illness.
pics has been well described in adults leaving the icu. studies are still limited in children, but current data confirms what pediatric healthcare providers have been suspecting for a few years: children, just like adults, develop significant new impairments after leaving the picu. in fact, some worry children are at higher risk of pics, given the unique interplay of critical illness and intervention measures during integral periods of brain development. even small disruptions during this developmental explosion can have significant consequences.
in canada, more than 114,000 children are admitted to a picu each year. their average length of stay is 19.8 days, more than double the average for admission to a general inpatient ward. in the united states, approximately 480,000 children and youth are admitted to a picu annually at a cost of $8 billion. with these numbers, more than one million north american children are projected to be at risk of developing pics-p in the coming decade.
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twenty years ago, a child admitted to a picu had a 20 per cent chance of dying. this number has dramatically improved over the last two decades, owing largely to medical and technological advances. today, the mortality rate is one to three per cent — the lowest it has ever been. but as more children become survivors, a disturbing trend is emerging. the number of children with chronic conditions has nearly doubled, with nearly a third having a severe disability. plus, admissions to picus have tripled.
“the focus has really shifted in the last five to 10 years,” says laurie lee, a picu nurse practitioner and director of the picu research program at the alberta children’s hospital in calgary. “we now recognize that we need to look past just survival, to really look at survivorship. it’s not good enough anymore for a child just to live to the end of their picu stay — we want them to eventually do grade 2 math, sleep at night and be happy, well-adjusted children.”
essentially, we have become better at keeping children alive, but survivors are living with more problems than ever before. this begs the question: what happens to children who survive critical illness?
the answer is that we don’t know. and that’s the problem.
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we are only slowly learning that, years after discharge, these children still have functional impairments. six months after discharge, up to 73 per cent have residual functional disabilities. physically, they can experience difficulty breathing, pain, difficulty walking and impaired self-care and feeding. up to nine per cent of previously healthy children continue to require help for daily care for up to three years after critical illness. five months post-discharge, one study demonstrated that 38 per cent of survivors had symptoms of a fatigue disorder, while 72 per cent struggled to sleep.
pics-p can affect behaviour, too. one month after discharge, up to 28 per cent of children exhibit poor adaptive behaviours, suffering from irritability and mood swings. they also have a lower adaptability to change, and fear becoming ill. anecdotally, parents also describe decreases in their child’s self-esteem and emotional well-being.
new cognitive impairment is also seen in three to 73 per cent of survivors and may worsen over time. a study of 29,352 picu admissions across 24 sites noted that 10 per cent of those discharged had a decline in overall functional ability compared to their baseline functioning at admission. of these 3,016 patients who acquired functional disabilities, only 2.3 per cent had moderate-to-severe disability before their admission. in other words, more than 87 per cent of these children were completely normal before their critical illness. after, they had brain dysfunction that impaired their ability to live a normal life.
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it is not surprising, then, that a large proportion of children also demonstrate lower iq and moderate-to-severe deficits in attention and memory. these children are facing significant difficulties at school, struggling to pay attention and recall facts. some of them may go on to be diagnosed with adhd or learning disabilities.
perhaps the strongest evidence yet is for the profound psychological effects of critical illness in children. in a review of nine studies of children following critical illness, post-traumatic stress disorder (ptsd) was diagnosed in five to 28 per cent, but symptoms of ptsd occurred in 35 to 62 per cent. this is important because it emphasizes that many children exhibit significant mental-health symptoms without meeting formal criteria for diagnosis of the disorder.
a study of 88 children five months after discharge found a 20 per cent risk for a general psychiatric disorder — emotional dysregulation, hyperactivity, social difficulties and conduct problems. in another study, seven to 12 per cent had symptoms of depression.
evidence also shows that parents and caregivers are significantly impacted psychologically by a child’s critical illness. after picu discharge, one-third of parents have acute stress disorder. up to 84 per cent report post-traumatic symptoms, 10 to 21 per cent have ptsd, 15 to 50 per cent have anxiety, and 15 to 30 per cent have depression.
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these parents are also not getting the recognition or support that they need. “until a parent is confident that their child will survive, they are understandably almost incapable of thinking about what comes after,” says lee. “the picu is a stressful place for families. it is our job as clinicians to start thinking about these long-term consequences earlier.”
some canadian picus are already implementing changes from what they are learning from pics-p. one example is the reduction of picu delirium — the reversible, fluctuating brain dysfunction that happens to 30 to 50 per cent of children in the picu. children who experience delirium are more likely to have adverse neuro-developmental effects after discharge. to mitigate this, the alberta children’s hospital is implementing protocols to keep children more awake, using less medications that may be harmful to the brain and involving parents early in the process. these measures have also been implemented in other picus, including mcmaster children’s hospital in hamilton.
change might be happening, but the experts remain resolute: they need more — more ways of following patients who leave the picu, more ways of monitoring and treating their symptoms, more awareness among primary health-care providers about pics-p, and more data on patient outcomes that can change what happens in the picu to prevent pics-p in the first place.
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lee is advocating tirelessly for co-ordinating all 17 canadian picus to pool their data and clinical experience so that opportunities for intervention can be easily identified. “we need a large, co-ordinated, national effort to define the outcomes in children that we need to measure,” says lee. “that is really the missing piece.”
as rates of adhd, anxiety, depression, sleep problems and learning disabilities soar in canadian children, we may be missing a huge opportunity for early intervention. to fill this gap, some picu clinicians are calling for the establishment of post-icu follow-up clinics, similar to those for babies who survive a neonatal icu.
canada’s first pediatric post-icu clinic was established in september 2018 at the centre hospitalier universitaire sainte-justine (chu sainte-justine) in montreal, the largest mother and child centre in canada. laurence ducharme-crevier, a pediatric intensive care physician, founded the clinic along with a colleague. “one of the main reasons to start the clinic was to see what the outcomes in these children are after critical illness,” she says. “we need this information so that change can continue happening in the picu itself.”
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ducharme-crevier tells the story of one of her sickest patients — a 200-pound, 6-foot-tall teen who had been admitted to the picu with viral encephalitis, an inflammatory condition of the brain. the critical care team was almost certain that the teen — intubated, sedated and paralyzed — was going to die.
“but then he got better,” she says. “he left the picu waving goodbye with a smile on his face, and we were elated. two months later we saw him at the follow-up clinic. he had forgotten how to take a shower, left boiling water on the stove and was giving money to kids on the street. this child — our miracle — was nowhere close to any semblance of his normal life.”
research shows that a picu follow-up clinic could be well-suited to monitor and support symptoms of pics-p in picu survivors. they would be able to screen for anxiety, depression, ptsd, emotional and behavioural problems, hyperactivity and school problems. this can allow children and parents to be referred to supports as early as possible, including additional support at school. it can also allow for increased awareness for primary health-care providers on the far-reaching effects of pics-p.
in a study done in quebec, up to one-third of picu patients did not have a family physician or pediatrician. this means that two-thirds of picu survivors were lost to follow-up. for those who do have primary care physicians, many consequences are still being missed. this is not surprising to ducharme-crevier or lee.
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“part of the reason pics-p symptoms go missed after picu discharge is because we just haven’t known about this for long enough,” says lee. “most pediatricians and general practitioners, who assume the primary care needs for children after a hospital discharge, don’t receive any formal training in this pics-p. they don’t know to look for this yet.”
“if you don’t know what to screen for, you naturally won’t be asking the right questions,” adds ducharme-crevier.
all the more reason follow-up clinics need to be in place, some say.
“what continues to motivate me are the patients and their families,” says ducharme-crevier. “the functional impairments that they experience — and the enormity of these deficits — are really compelling. the mental-health effects alone are huge. we need more resources for these patients. i think this is the first step to gather the data we need to get those resources, and to ultimately change what we do. this is important.”
dr. rubeeta gill is a fellow in global journalism at the dalla lana school of public health at the university of toronto.
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