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Signs & Symptoms
To recap from our first post in this series, the definition of Post Intensive Care Syndrome (PICS) is new or worsening health problems after a stay in the ICU. These health problems can affect the body, mind, and/or emotions and often present after the patient has been discharged from the hospital. These problems may last anywhere from a few weeks, to months, and in some cases even years.
People with PICS often experience a wide array of symptoms. The following symptoms are examples of what some people may experience:
- Body: Weakness, trouble with balance, pain, difficulty completing previously routine tasks such as driving and housework
- Mind: Difficulty with thinking or memory, trouble concentrating, confusion, word finding difficulty, mental "fog", and trouble with daily activities and work routines resulting in reduced or loss of work
- Emotions: Depression, anxiety, sleep disturbances, flashbacks, nightmares, irritability, anger, and agitation
Not every patient who experiences critical illness develops Post Intensive Care Syndrome. However those that do, often describe the symptoms that are highlighted above. Some people may develop several symptoms spanning the body, mind, and emotions. And some people may have difficulty with a single symptom affecting a single system. The number of symptoms and systems affected does not matter. What matters is that one recognizes and acknowledges that critical illness can cause prolonged difficulties for those who experience it. For some patients, just knowing that they are not alone in this can be incredibly helpful.
It can be very natural for people to try to hide or compensate for these difficulties, however this can ultimately be detrimental to long term recovery. If you or a loved one has been critically ill or injured and notice any of these (or similar) symptoms following, contact your healthcare provider. Use this website as a source of information to share.
More Information & Support
Want more information? Please see the other posts in the Breaking It Down series on PICS where our post-ICU recovery experts help makes sense of this challenging experience.
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PICS needs a Global wide focus. Let’s join forces on an international level and curate knowledge.
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1 ReactionCurating PICS knowledge with the goal to increase awareness for all involved patients, their relatives involved and incuding researchers and all professional who can contribute to a transmural continuum of care as well. This innovated way of intensive care needs a holistic view and starts during ICU stay.
In The Netherlands we started the prganisation ‘Family and patient centered intensive care’ to reduce the impact of ICU stay and to contribute to the development of this transmural care pathway. Still a lot to do!
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3 ReactionsWelkom to Connect, @ruudklerks. The Netherlands are leaders in patient- and family-centered care. I welcome your perspectives and resources to this discussion. I had not heard the term "transmural" continuum of care. I take it to mean "through walls" or in other words continuing care as the patient moves locations, for example ICU, ward, home or whatever the location pathway should be. Am I correct?
What is one change in care that can be make while the patient is still in ICU to improve the patient experience? What "magic" have you seen happen with such an approach?
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1 ReactionYes, that’s correct. Transmural mean the patient journey (together wit their directly involved loved-ones) from ICU to home. From intramural to extramural healthcare.
There is no such care pathway at all at the moment for all who have to deal with PICS, including PICS-F.
We at the Patient and Family Centered Intensive Care foundation (www.fcic.nl) see the surviving patient and their loved-ones directly involved in this process as one healing unit. They do this together. That’s why we founded IC connect (www.icconnect.nl) to offer guidance for them. We recently received the official support from the Dutch ministry of Health for our initiative.
We do want Intensive care (in fact healthcare in general) to develop a person centered holistic view of the future which optimizes the impact of ICU stay. Innovation of care with a continuum of care resulting in quality of life for patient and their family and friends.
We are in the process to help contribute to change of the system. We believe it is an important key to make this happen by connecting researcher, professionals and patients/relatives together all the time in this process. They are also participating in our FCIC foundation.
Post ICU care is a Global problem. It would be great to learn from each other as organizations involved. To curate the knowledge there already is. It’s a lifelong learning process.
There are already nice initiatives and would suggest to create a Global network in order to join forces and speed up the process. This care path is needed, but you are of course already aware of this.
Are you aware of such a network already existing? What do you think, in case such synergy is not available yet, would it be a good step forward to develop a Global initiative like this?
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