Postintensive Care Syndrome

What is Postintensive Care Syndrome?

Over the past fifty years, the immediate survival rate of patients in the Intensive Care Unit (ICU) has significantly improved. However, it’s important to note that many individuals who spent time in the ICU encounter ongoing declines in their physical and mental abilities long after they’ve been discharged from the hospital. Common mental health issues among both former ICU patients and their family members include anxiety, depression, and Post-Traumatic Stress Disorder (PTSD). Medical professionals use the term ‘Post Intensive Care Syndrome’ (PICS) to refer to these continuous decreases in physical, mental, and cognitive health following an ICU stay, which are not caused by other conditions like traumatic brain injury or stroke. The term PICS-F is used when the close family members of ICU patients also experience negative mental health outcomes, typically including sleep deprivation, anxiety, depression, and severe grief.

Over recent years, more children have been treated in Pediatric Intensive Care Units (PICU), but at the same time, fewer children are dying in these units. This results in a greater number of children who survive their PICU stay but are at risk of experiencing the long-term effects of PICS. These impacts can be particularly significant in children since they’re still in an important phase of development. Furthermore, healthy children usually rely on their parents and caregivers’ support, meaning a child’s recovery from a PICU stay can significantly affect the whole family. It can be a unique challenge for these PICU survivors to return to school and reconnect with their peer groups. Their siblings may also confront significant social and emotional stress. Parents of critically ill children often need to reduce their working hours or quit their jobs, leading to financial issues that can last long after the child’s illness. This is why the PICS-pediatric (PICS-p) model includes the social health of all family members of the PICU patient as a separate area of focus.

What Causes Postintensive Care Syndrome?

Post Intensive Care Syndrome (PICS) often leads to long-lasting physical impairments that stem from muscle weakness acquired while in intensive care unit (ICU), which we call ICU-acquired muscle weakness (ICUAW). In other words, ICUAW is when the strength of your muscles decreases for no known reason except being in ICU. This can affect many aspects of your health, making it hard for you to breathe without assistance, talk, swallow, or move your arms and legs. ICUAW can take a few forms, such as muscle weakening due to lack of use, critical illness polyneuropathy (CIP) which is nerve damage due to critical illness, and critical illness myopathy (CIM) which is muscle disease due to critical illness. You can also have a combination of both CIP and CIM which we call critical illness neuromyopathy (CINM).

Mechanical ventilation, a machine that helps you breathe, can cause the muscles used for breathing to become weaker quite rapidly. The use of certain drugs, like opiates for pain control and sedatives for relaxation, during ventilation can add to this weakening. This is because these medicines curb the nerve signal that triggers the muscles for breathing. Furthermore, if neuromuscular blockers, which restrict muscle movement, have been used to make ventilation easier, they can also contribute to muscle weakness.

Besides the weakening of breathing muscles, your arm, leg, and direct muscles can also get weaker if you’ve had to stay in bed or couldn’t move much in the ICU.

Factors such as inflammation, chemical imbalances, hormonal issues, and poor nutrition also contribute to ICUAW by affecting protein synthesis, which is crucial for muscle health. Deficiency in Vitamin D, which is commonly seen in hospitalised patients due to lack of sunshine, can contribute to muscle weakness, especially among those with darker skin tones.

PICS can also lead to cognitive impairments, like problems with memory or attention, even years after leaving ICU. Risk factors that increase the chances of such problems include frequent or lengthy spells of high or low blood sugar and pre-existing cognitive issues. Large studies have found that if a patient had low oxygen levels for long during the ICU stay, they are likely to have cognitive problems a year later.

PICS can impact mental health as well. It is not surprising given that being in ICU can be a highly traumatic experience filled with physical discomfort and disorientation. Factors such as previous psychiatric history, being female or young, exposure to sedatives, fuzzy memory of the ICU experience, and occurrence of traumatic memories or nightmares in the hospital can increase the risk of mental health issues after leaving ICU.

ICU experience can also cause distress to the family members, which we call PICS-f. However, family members of children in ICU are less likely to develop PICS-f than those of adults. Family members, especially spouses and unmarried parents, who are young, less educated, women or had previous mental health issues are more at risk. Cultural factors can also play a role, with the level of family involvement in medical decision-making potentially impacting the trauma experienced.

Risk Factors and Frequency for Postintensive Care Syndrome

As the world’s population grows older, and more people survive intensive care treatment, there’s a growing concern for a condition known as Post Intensive Care Syndrome (PICS). PICS affects not only the patients but also their families (PICS-f), and children who have been in intensive care (PICS-p). This syndrome can lead to the following problems:

Physical impairment, seen in between 25-80% of those who survive intensive care as an adult, especially if they have survived sepsis.
Cognitive issues present in up to 80% of survivors, which might lessen over time but can also persist for years.
Post Traumatic Stress Disorder (PTSD), experienced by up to 50% of survivors and can persist for years after hospital discharge.

A recent study found that after 3 months, 64% of survivors had at least one of the above problems, and even after a year, 56% of survivors were still affected. Those with a higher level of education and lower frailty seemed to have a better chance of being PICS-free at both points of follow-up.

Unfortunately, family members of ICU patients can also be affected by PICS-f. Up to 75% of them might develop symptoms and a third might need psychiatric medication. The most common issue for these family members is anxiety, but they could also suffer from depression and PTSD.

The rates of PICS-p in children who survive intensive care are not as well-documented, but a recent comprehensive review found that up to 36% of children had functional impairment at discharge, 26% at six months, and 19% at two years. This shows the importance of further research and understanding in this area.

Signs and Symptoms of Postintensive Care Syndrome

When medical professionals are examining patients who have recently recovered from severe illnesses, they should check for physical, cognitive, and mental health problems that might be part of the Post Intensive Care Syndrome (PICS). It’s also often helpful to get additional information from family members or caregivers, especially when the patient might have ongoing issues with cognition. Some experts propose a “functional reconciliation”, similar to a medication reconciliation, which would look at what the patient could do before and after their ICU stay.

This review should look at:

Everyday tasks
Exercise capacity
Mood
Cognitive function indicators such as returning to work or managing their own affairs

It’s also important to do a physical exam that includes checking vital signs, as the health of patients who are recovering from critical illness might still be fragile. The overall appearance of a patient can also give healthcare providers clues about the patient’s health and ability to function. For instance, noticeable weight loss in the temples could indicate muscle loss, while a lack of personal hygiene could suggest difficulty with everyday tasks.

A comprehensive evaluation needs to be done to check for mental health problems. Signs to watch out for include any unusual body language or emotional responses. The neurological exam in particular should look for signs of muscle disease and nerve damage, as these are common in ICUAW. A simple cognitive test, like the Mini-Mental Status Exam, can help flag cognitive issues that might need more thorough testing.

Testing for Postintensive Care Syndrome

Figuring out whether someone has Post Intensive Care Syndrome (PICS), which is a mix of physical, mental, and emotional symptoms that can occur after an extensive stay in the intensive care unit (ICU), can be tricky. This is mainly because patients often transition from the ICU to rehab facilities or home care, and there’s usually not a single doctor maintaining oversight of their health. While in the UK, there are special clinics for post-ICU care, this isn’t common in the US. Hence, crucial follow-up often occurs at primary care appointments. Thus, it’s crucial that primary care doctors and others who meet these patients after discharge understand the signs of PICS.

As an example, Vanderbilt University has a clinic especially dedicated to post-ICU care, named the ICU Recovery Center, established in 2012. They spot and address PICS symptoms, and while not all centers can have the same system, some elements can be adopted into regular primary care or types of treatment after surgery. Usually, the first visit is scheduled two weeks after the hospital discharge. This visit consists of several exams like spirometry (a test that measures lung function), a six-minute walk test (to check physical strength), screenings for mental health issues, and a quick cognitive assessment. They also review what happened to the patient during the ICU stay to help match the patient’s memory with the actual events. However, problems such as patients not showing up for follow-ups or appointments limit this system’s effectiveness.

In an aim to help spot PICS in patients after they’ve left the hospital, some groups have designed questionnaires. These can be done remotely, which can be a big help since arranging transport to clinics can be difficult for patients recovering from an ICU stay. Also, some studies have found that telemedicine (remote healthcare via video calls or other technology) can be effective in checking for PICS symptoms. While this works for some aspects of the assessment, others, like certain nerve and muscle tests, require personal visits. These tests help distinguish general weakness from specific nervous system conditions, as different conditions require different therapeutic approaches.

Treatment Options for Postintensive Care Syndrome

Post Intensive Care Syndrome (PICS) is a condition that can affect people after they’ve been in an intensive care unit (ICU). Sadly, current ICU clinics and services that address PICS once developed haven’t had significant success in improving the person’s quality of life.

So, how best to deal with PICS? Prevention. It’s much better to start taking steps to prevent PICS while the patient is still in the ICU. This strategy is followed by over 70 big hospitals in the U.S. who use something called the “ABCDEF” bundle of care.

Here’s what ABCDEF stands for:

A: Focused attention on pain assessment, management, and prevention
B: Promoting spontaneous breathing and awakening trials
C: Choosing the most appropriate sedation and pain control (emphasizing the need to maintain light levels of sedation and avoid certain drugs like benzodiazepines, which can cause confusion and memory loss)
D: Assessment, prevention, and management of delirium (sudden, severe confusion)
E: Encouraging early physical activity and exercise
F: Engaging and empowering family members in the care process

These practices are designed to prevent the physical, cognitive, and mental health impacts of PICS. One interesting method used is ICU diaries, where the care team records chronologically what’s happening during the ICU stay, often with pictures. These diaries provide a valuable record for both the patients and their families, helping them understand and remember the patient’s medical journey. Research has shown that ICU diaries can help lower rates of depression and anxiety in ICU survivors while also improving their overall quality of life.

Quality communication between the care team and the family is key to reducing the risk of PICS in family members. This can be achieved through regular family meetings, empathetic listening, avoiding medical jargon, and involving social workers, therapists, and clergy members. Involving family members in basic care routines for the patient in the ICU has also been found to lower rates of Post Traumatic Stress Disorder(PTSD) in family members.

Post Intensive Care Syndrome (PICS) is a challenging condition that can be mistaken for other illnesses. Here’s how doctors differentiate PICS from other possible causes:

Physical impairments from PICS are different from other causes of weakness or neurological issues, such as a stroke or spinal disorders.
Doctors also have to rule out and treat any electrolyte, hormone, or nutritional imbalances that might lead to these symptoms.
Although cognitive decline is a symptom of PICS, it’s different from other causes of dementia, particularly in older people. Unlike other forms of dementia (like Alzheimer’s disease) which typically get worse over time, cognitive issues related to PICS usually stabilize. Additionally, PICS patients have less pronounced memory problems but have greater struggles with attention and processing speed.

Severe depression could be a part of PICS and may be mistaken for cognitive decline, as both can lead to deficits in attention and concentration. It’s important to tell the difference between the two: depression can be treated with antidepressants and therapy, while cognitive decline cannot. The mental health aspects of PICS are also complicated and can exist along with life-long psychiatric diagnoses. Therefore, healthcare providers need to consider other possible organic causes of these problems. They should not merely tie them to the experience of having had a loved one in intensive care.

What to expect with Postintensive Care Syndrome

The long-term outlook for people who experience Post Intensive Care Syndrome (PICS), a condition that can occur after a serious illness that required intensive care, varies a lot. It mostly depends on how severe the critical illness was, how much it affected the patient at the time of leaving the hospital, and how healthy and functional the patient was before the illness.

Physical problems caused by PICS can often improve, especially with the help of physical therapy (PT) and occupational therapy (OT). However, problems relating to thinking, memory, and mental health can be harder to shake off. According to a study involving 406 US Intensive Care Unit (ICU) survivors, while the rate of physical issues dropped from 23% to 17% between 3- and 12-months after leaving the hospital, improvements in thinking or mental health issues were less impressive, with about a third of patients still facing these issues at both times.

In terms of thinking skills, studies show that 25% of survivors of Acute Respiratory Distress Syndrome (ARDS), a type of severe lung sickness, still had problems six years after leaving the hospital. Rates of enduring thinking problems were similarly high among survivors of sepsis, a life-threatening response to an infection. While these thinking issues may be as severe as those seen in dementia conditions such as Alzheimer’s disease, they usually don’t get worse over time and can even improve.

There isn’t a lot of information about the outlook for children experiencing PICS, but it seems that their rates and persistence of issues are similar to those found in adults. Furthermore, PICS-f, a condition where close family members of ICU patients experience symptoms similar to PICS, is fairly common. Usually, the mental health impacts lessen naturally over time, and improvements can be further boosted with psychotherapy and sometimes medication.

Possible Complications When Diagnosed with Postintensive Care Syndrome

The effects of Post Intensive Care Syndrome (PICS) and PICS-f (affects on family members) are long-standing and can significantly disturb a patient’s and their family members’ financial stability. For instance, a UK study discovered that a year following their discharge from intensive care, around 22% of patients still depended on help for daily tasks, generally provided by unpaid family members. Approximately 28% reported that their family income was adversely affected due to their hospitalization in ICU and the ensuing recovery period.

A similar study in the US revealed a 50% decrease in employment among ICU survivors, with half of this group being unemployed for the first time. Family members dealing with mental health issues related to PICS-f not only have to face the loss of work but may also not be fully equipped to take care of the ICU survivor, who often need assistance long after being discharged from the ICU.

Characterized by cognitive, social, and emotional disturbances, PICS has an even more profound impact on children who’ve survived an intensive care unit stay. Parents often have to reduce their work hours to care for their recovering child, which leads to a significant financial strain. This requirement also burdens parents, making it challenging for them to provide enough emotional and temporal support to their other children at home. For these reasons, the PICS-p framework incorporates considerations about social health.

List of Impacts:

Financial strain due to decrease or loss of employment
Increased dependency on family members for daily care
Mental health issues among family caregivers
Disturbances in cognitive, social, and emotional development in children
Reduced time and emotional energy for parents to attend to other children
Affected social health in the family sphere

Preventing Postintensive Care Syndrome

Applying the ABCDEF bundle of care in the Intensive Care Unit (ICU) can help prevent a condition known as Post Intensive Care Syndrome (PICS), which affects patients after they leave the ICU. This syndrome leads to health problems that persist even after the patient has been discharged from the hospital.

Good patient handovers, where the medical team passing on the patient’s care focuses on the patient’s overall function, not just the health of individual organs, can help improve the care ICU patients get during their hospital stay and recovery. It is often in outpatient settings, like at routine doctor visits, that long-term issues from PICS are discovered. That’s why the patient’s regular doctor needs to know about PICS, to refer the patient to the appropriate follow-up services.

It’s also vital to talk to patients and their families about PICS when they are leaving the ICU or hospital. Many people do not know what signs to look for to identify this syndrome. Given the high chance of mental health problems in people who have been in the ICU and their families, it would be beneficial to routinely refer them to affordable and accessible mental health services.

Frequently asked questions

Post Intensive Care Syndrome (PICS) refers to the continuous declines in physical, mental, and cognitive health that many individuals experience after being discharged from the Intensive Care Unit (ICU). It includes mental health issues such as anxiety, depression, and Post-Traumatic Stress Disorder (PTSD), and is not caused by other conditions like traumatic brain injury or stroke.

Post Intensive Care Syndrome (PICS) affects between 25-80% of adult survivors of intensive care.

Signs and symptoms of Post Intensive Care Syndrome (PICS) can include physical, cognitive, and mental health problems. Some specific signs and symptoms to watch out for include: - Physical problems: Fragile health, noticeable weight loss in the temples indicating muscle loss, lack of personal hygiene suggesting difficulty with everyday tasks. - Cognitive problems: Difficulty with cognitive function indicators such as returning to work or managing their own affairs. - Mental health problems: Unusual body language or emotional responses, signs of muscle disease and nerve damage, as these are common in ICUAW (Intensive Care Unit Acquired Weakness). - Other potential indicators: Mood changes, decreased exercise capacity, and difficulty with everyday tasks. It is important for medical professionals to conduct a comprehensive evaluation to check for these signs and symptoms in patients who have recently recovered from severe illnesses. Additional information from family members or caregivers can also be helpful, especially when the patient might have ongoing issues with cognition.

Post Intensive Care Syndrome (PICS) can be acquired after being in the intensive care unit (ICU) due to various factors such as muscle weakness acquired in the ICU (ICU-acquired muscle weakness), lack of muscle use, critical illness polyneuropathy (nerve damage), critical illness myopathy (muscle disease), or a combination of both. Other factors that contribute to PICS include inflammation, chemical imbalances, hormonal issues, poor nutrition, deficiency in Vitamin D, and the use of certain drugs during ventilation.

The doctor needs to rule out and treat any electrolyte, hormone, or nutritional imbalances that might lead to the symptoms of Post Intensive Care Syndrome (PICS). The doctor also needs to differentiate PICS from other causes of weakness or neurological issues, such as a stroke or spinal disorders. Additionally, the doctor needs to differentiate cognitive decline related to PICS from other causes of dementia, particularly in older people.

The types of tests that are needed for Post Intensive Care Syndrome (PICS) include: - Spirometry: This test measures lung function and can help assess any respiratory issues that may be present. - Six-minute walk test: This test evaluates physical strength and endurance by measuring how far a patient can walk in six minutes. - Screenings for mental health issues: These screenings can help identify any mental health conditions, such as depression or anxiety, that may be present. - Quick cognitive assessment: This assessment helps evaluate cognitive function and memory. - Nerve and muscle tests: These tests are done in-person and help distinguish general weakness from specific nervous system conditions, as different conditions require different therapeutic approaches.

Post Intensive Care Syndrome (PICS) is best treated through prevention rather than intervention. The "ABCDEF" bundle of care is used by over 70 big hospitals in the U.S. to prevent PICS. This bundle includes focused attention on pain assessment and management, promoting spontaneous breathing and awakening trials, choosing appropriate sedation and pain control, assessing and managing delirium, encouraging early physical activity and exercise, and engaging and empowering family members in the care process. Additionally, ICU diaries can be used to record the patient's medical journey and help lower rates of depression and anxiety in ICU survivors. Quality communication between the care team and family members is also important in reducing the risk of PICS.

When treating Post Intensive Care Syndrome (PICS), there can be several side effects. These include financial strain due to a decrease or loss of employment, increased dependency on family members for daily care, mental health issues among family caregivers, disturbances in cognitive, social, and emotional development in children, reduced time and emotional energy for parents to attend to other children, and affected social health in the family sphere.

The prognosis for Postintensive Care Syndrome (PICS) varies depending on the severity of the critical illness, the patient's pre-illness health and functionality, and the specific symptoms experienced. Physical problems caused by PICS can often improve with physical therapy and occupational therapy, while thinking and mental health issues may persist for a longer time. Studies have shown that a significant percentage of ICU survivors still face thinking and mental health issues several months or even years after leaving the hospital. However, these issues usually do not worsen over time and can even improve with time and appropriate treatment.

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