Diagnosis and management of adults with post-intensive care syndrome (PICS) and their relatives

Key points

Post-intensive care syndrome (PICS) refers to a set of varied symptoms appearing up to 12 months or beyond following a stay in an intensive care unit.

It is a common syndrome (affecting more than half of patients three months after an ICU stay defined as new or worsening impairment in physical, psychological/psychiatric and/or cognitive status, which may limit activities, impair quality of life and independence and impede the social and professional reintegration of patients.

Its diagnosis is proposed in the event of any symptoms appearing for the first time or worsening up to 12 months (or beyond) following hospitalisation in at-risk patients.

A diagnosis of PICS-Family is proposed in the event of the onset or worsening of psychological/psychiatric symptoms (anxiety, depression or post-traumatic stress disorder) in family members or carers, persisting following hospitalisation of their family member in an intensive care unit or appearing up to 12 months following hospitalisation. These symptoms can have family, social and professional consequences for family members and carers.

Screening and follow-up should ideally be carried out by a multidisciplinary team including physicians and other healthcare professionals with an awareness of PICS, but may involve all healthcare professionals who see the patient in the year following admission to an ICU.

What is PICS ?

PICS (Post-Intensive Care Syndrome) is a frequent syndrome defined as new or worsening impairment in physical, psychological/psychiatric and/or cognitive status following a stay in an intensive care unit, which may limit activities, impair quality of life and functional status and impede the social and professional reintegration of patients.

What are the problems associated with this syndrome?

It is recommended that a diagnosis of PICS be proposed when one or more of the following symptoms develop or worsen, either in a persisting manner after an ICU stay, or occurring up to 12 months after the ICU stay, or even later: 

• physical symptoms related to muscular, neurological, osteoarticular, skin, ENT, respiratory, cardiovascular, renal and general disorders (malnutrition, dyspnoea, asthenia, pain) that can lead to deconditioning, a reduction in exercise capacity and/or fatigue;
• psychological/psychiatric symptoms (anxiety, depression, post-traumatic stress disorder);
• cognitive symptoms including difficulties with memory, attention, comprehension and executive functions.

Especially when several are present, these symptoms can lead to objective or perceived limitations in activity, impair quality of life and functional status, and impede social and professional reintegration. They can also impair the quality of life of family members and carers (EC).

It is recommended that a diagnosis of PICS-family be proposed in the event of the onset or worsening of psychological/psychiatric symptoms (anxiety, depression or post-traumatic stress disorder) in family members or carers, persisting after the ICU stay of their family member or appearing up to 12 months or beyond following hospitalisation. These symptoms can have familial, social and professional consequences for family members and carers (EC).

Which patients are at risk of developing this type of syndrome?

At the current time, no reliable tool for predicting the development of PICS on an individual level can be recommended. Therefore, having a high degree of suspicion and actively screening for PICS is key when one or more of the proposed risk factors are present.

Preventing PICS in the ICU

It is recommended that early mobilisation and rehabilitation protocols be implemented in intensive care units, with the aim of mobilising patients passively and then actively as soon as possible, adapting the intensity as required (grade B-C).

In addition to the usual good clinical practices, it is recommended that multimodal programmes for the detection, prevention and treatment of delirium be put in place in order to reduce the incidence of cognitive disorders after an ICU stay. These programmes should place particular emphasis on no (EC).

Among the measures to prevent ICU delirium and post-traumatic stress disorder, it is recommended that physical restraints not be used in intensive care settings. When the use of physical restraint is unavoidable, it should be used for the shortest possible time and regularly reassessed (Grade C).

The use of diaries during the ICU stay is recommended, since these are likely to reduce the incidence of psychological/psychiatric symptoms (particularly symptoms of anxiety and depression) of PICS following the ICU stay (Grade C).

The diary should be systematically given to the patient, with the supervision of a healthcare professional (EC).

Preventing PICS-family

To reduce the incidence of the psychological/psychiatric symptoms of PICS-family (anxiety, depression or post-traumatic stress disorder), the following recommendations are made:

• implement information and communication protocols with carers and family members, using, in particular, written documents (information brochures, etc.) and structured interviews (dedicated time and place) and centred on the person and their family members;
• do not restrict ICU visiting hours for carers and family members, it being understood that they may be required to leave the patient's room when certain care procedures are being performed;
• allow carers and family members to participate in care when they wish to do so and in accordance with the patient's preferences (EC).

Screening and diagnose PICS

Screening for PICS in at-risk patients involves all healthcare professionals who see the patient in the year following admission to an ICU.

It is recommended that patients identified as being at risk of developing PICS should routinely undergo a structured clinical assessment, repeated over time, to detect the development of PICS symptoms. This assessment should be performed:

• before discharge from the ICU (for the earliest symptoms);
• at key transitional periods in the patient's care pathway: discharge from intensive care to a hospital ward or a medical and rehabilitative care unit, then before discharge home;
• within three to six months following the patient’s discharge home (face-to-face or remote consultation) (EC).

In addition to interview and clinical assessment, it is recommended that a set of scores and scales be used to screen for PICS. An assessment should be carried out systematically before discharge from intensive care, and should be repeated during the course of the patient's care. The choice of tests to be performed will be adapted to the patient's clinical condition (EC).

* The total time required to perform these tests is estimated to be less than 30 minutes.

It is recommended to use the same tools to screen for symptoms of PICS-family (psychological/psychiatric symptoms and impact on quality of life).

It is recommended that the screening and follow-up of patients at risk of PICS be carried out by a multidisciplinary team including physicians and other healthcare professionals with an awareness of PICS (including healthcare assistants, social workers, dieticians, occupational therapists, physiotherapists, nurses – possibly advanced practice nurses –, neuropsychologists, speech therapists, pharmacists and psychologists, etc.). The objectives of this screening and follow-up are to:

• identify the most appropriate care pathway for the patient: coordinated outpatient care hinged around the primary care physician for most patients, or medical and rehabilitative care unit for patients who require it;
• put in place and coordinate appropriate rehabilitation and follow-on care structures after the patient returns home;
• systematically offer a follow-up appointment within three to six months following discharge from intensive care, potentially using telehealth methods. The presence of family members and carers at this post-intensive care consultation is encouraged.

The composition of the multidisciplinary team will be adapted depending on the needs of the patient and the local organisation.

This follow-up will be carried out in addition to follow-up of pre-existing comorbidities (EC).

It is recommended that this screening and follow-up be initiated in a coordinated manner by a designated hospital healthcare professional, primarily an intensive care specialist or a physical medicine and rehabilitation specialist, with awareness of PICS and access to all the information concerning the patient's health and management in the intensive care unit (EC). 

It is recommended that the coordinator be designated as early as possible in the care pathway, namely as soon as the patient is admitted to the ICU or at the latest before discharge home. The objective should be to transfer coordination to the patient’s own primary care practitioner as soon as possible (EC).

It is recommended to promote efficient transmission of information throughout the care pathway by systematically including the following in discharge letters (following a stay in the ICU and hospital ward):

• identification of patients at risk of developing PICS and therefore requiring systematic reassessment;
• a description of patients' clinical condition at discharge and, when appropriate, their rehabilitation and follow-up needs, as assessed by the designated multidisciplinary team;
• the healthcare professional responsible for the initial coordination of the care pathway.

It is recommended that discharge letters be systematically sent to the patient's primary care practitioner and to any other healthcare professionals and hospital departments concerned. A copy should also be given to the patient (EC).

A return to the patient’s previous functional status, as well as social and professional reintegration, when possible, must be the key objectives of the care delivered. If required, this social and professional reintegration should be managed in liaison with social services and/or occupational medicine services (pre-return to work visit) and/or referral to the regional disability centre if necessary (EC).