Seven lessons from 20 years of

follow-up of intensive care

unit survivorsRichard D. Griffithsa and Christina Jonesb

Purpose of review

Through a personal narrative, the authors discuss the

lessons they have learned from 20 years of intensive care

follow-up and rehabilitation.

Recent findings

There is a greater understanding of the legacies of the

physical, psychological and cognitive problems after critical

illness, and new momentum toward developing and

delivering practical care to both survivors of intensive care

and their relatives.

Summary

The need and demand for care after critical illness is now

firmly established.

Keywords

cognitive dysfunction, critical illness, diaries, follow-up,

outcomes, rehabilitation

Curr Opin Crit Care 13:508–513. � 2007 Lippincott Williams & Wilkins.

aDivision of Metabolic and Cellular Medicine, School of Clinical Science,University of Liverpool, Liverpool and bCritical Care Unit, Whiston Hospital,Prescot, Liverpool, UK

Correspondence to Professor R.D. Griffiths, Professor of Medicine (Intensive Care),Division of Metabolic and Cellular Medicine, School of Clinical Science, Universityof Liverpool, Duncan Building, UCD, Daulby Street, Liverpool L69 3GA, UKTel: +44 151 706 4086; fax: +44 151 706 5802; e-mail: rdg@liverpool.ac.uk

Current Opinion in Critical Care 2007, 13:508–513

Abbreviations

ICU in

508

tensive care unit

PTSD p osttraumatic stress disorder

� 2007 Lippincott Williams & Wilkins1070-5295

IntroductionThe development of intensive care has allowed the

survival of more patients with complex multiple organ

system failure, but the very nature of this disease process

leaves a legacy of problems that must be addressed

during recovery. For years, intensive care was merely

considered a ‘service stop-over’, and the anaesthetic

intensive care profession, with some exceptions, had little

concern for where the patients came from and went to on

discharge. Follow-up was usually performed by those

involved with the admitting diagnosis and, historically,

there was little impetus to explore whether patients had

specific problems after intensive care that needed atten-

tion during rehabilitation.

In 1985, one author (R.D.G.) was fortunate to join the

oldest medically founded general intensive care unit

(ICU) in the UK (around 1959) where there had been

a history of continuity of care of some medical admis-

sions. Anecdotal evidence suggested that other patients

might also benefit from follow-up, but outcome data

beyond ICU survival were lacking. In 1987, clinical

follow-up of selected patients was started so that in 1988,

in response to a request from the Kings Fund Panel [1],

we could undertake the first UK exploration of the costs

and 6-month morbidity and mortality outcomes from

adult intensive care [2]. Using quality of life measures,

we identified a significant degree of physical and psycho-

logical morbidity at 6 months that contributed to restric-

tion in daily activities and serious disability or distress in

40 and 20% of patients, respectively. These data also

confirmed the limitations associated with assessment of

ICU survival and outcome in isolation. A plethora of

questionnaire-based follow-up information has appeared

over the last two decades and, while showing the many

anticipated challenges facing post-ICU patients, the abil-

ity of these studies to identify unrealized or remediable

issues to improve patient care, was limited. In light of

this, and with coauthor C.J., we established a research-

based clinical follow-up and rehabilitation service in

1990, to develop tools to understand [3] the physical

and psychological sequelae of critical illness, and how

to effectively intervene [4]. Starting within ICU, we

followed the patients on the wards, and as outpatients

at 2, 6 and 12 months [5]. The ability to closely follow-up

the morbidity and mortality outcomes to 6 months also

allowed us to undertake a landmark nutrition study

during the mid-1990s [6].

Lessons from 20 years of follow-up Griffiths and Jones 509

Table 1 Seven lessons from 20 years of follow-up of ICU

survivors

(1) Physical weakness is profound, but recovery is impressive(2) Recall of the ICU and memory difficulties are a problem(3) Acute stress reaction, panic attacks and posttraumatic stress

disorder may be a consequence of memory deficits(4) The withdrawn patient in the ICU may not be depressed, but

may be delirious(5) We do not routinely recognize cognitive dysfunction(6) Relatives have problems too and need help and understanding(7) A prospective nurse and relative kept diary may be used as a

post-ICU therapy

ICU, intensive care unit.

The narrative review presented here describes the

lessons (see Table 1) we have learned over 20 years of

what we call ‘intensive care after-care’ [7,8].

Lesson 1: physical weakness is profound,but recovery is impressiveWe did not appreciate the extent of muscle wasting until

serial muscle biopsy data from the 1990s [9] showed

losses of muscle protein reaching 2%/day [10], and a

mean reduction in fibre area of 4% in the faster type 2

fibres and 3% for the slower type 1 fibres was observed in

ICU survivors [11]. Ultrasound studies confirmed the

masking effect of increased oedema and elucidated

why simple limb girth measurements fail to disclose

the true loss of contractile machinery [12]. Immobility

and absence of the normal stretch and stresses in the ICU

contributed to the muscle injury since passive stretching

alone in neuromuscularly paralysed ICU patients may

reduce protein loss and maintain muscle structure [13].

A large follow-up study of patients with acute respiratory

distress syndrome confirmed that muscle weakness is the

single greatest determinant of outcome and showed that

the time for recovery should be measured in months to

years rather than days to weeks [14].

Critical illness motor and sensory polyneuropathy, while

a marked challenge within ICU, may become a less

important clinical issue in the long-term patient after

critical illness if the muscle bulk rebuilds. Early descrip-

tions of the pathology of these lesions tended to focus on

electrophysiology [15]; however, time has shown that

both muscle and nerve pathology coexist with a spectrum

of tissue involvement [16–18]. Key to appreciating the

pathological changes has been the association with

inflammatory states and the evidence of a vasculopathy

with marked endothelial activation in both nerve [19] and

muscle [20], and the central role that membrane excit-

ability contributes to this dysfunction [21]. Similarities

with diabetic neuropathy has led to the observation that

tight glycaemic control in the critically ill not only

improves survival, but also reduces the incidence of

neuropathy [22].

Major physical mobility problems and the type of

physical aids required after critical illness are predicted

by the duration of mechanical ventilation and length of

stay in the ICU [23]. The recognition of these physical

problems and their management after the ICU requires

detailed follow-up and common sense [24]. For example,

in the most severely affected patients, weakness may

preclude safe swallowing and the ability of the patient to

feed him/herself may prove impossible. The not uncom-

mon clouding of consciousness, confusion and impaired

cognitive function may confound accurate clinical exam-

ination on the ward. Not until the tissue oedema has

resolved can the true extent of muscle wasting be deter-

mined and muscle power correctly referenced to avail-

able muscle bulk. Coexisting joint stiffness may further

limit assessment of power. The most useful clinical

assessments should consider the activities of daily living,

and include rising from the bed and the chair, and the

ability to stand and walk unassisted. Even in the absence

of obvious neurological impairment, profound muscle

wasting results in weakness of the postural muscles

which are crucial for recovery when stumbling. It is for

this reason that a most common complaint is difficulty

walking over rough ground and the provision of different

walking aids, especially in windy conditions, can be of

help. Similarly, patients must be warned at hospital

discharge that while they may have recovered sufficient

strength to climb the stairs, they may lack the strength for

a confident and controlled descent. Alternatively, they

may only have sufficient strength to climb the stairs once

in the day, making a stair assessment prior to hospital

discharge of little practical use.

Physical therapy is the mainstay of fostering recovery and

the principle of a patient-centred rehabilitation manual

that has demonstrated proven benefit in a randomized

controlled trial [25]. Physical rehabilitation should pre-

ferably start within intensive care and is safe to do even

while patients are still ventilated [26]. In very long stay

ICU patients, electromyographic evidence of chronic

denervation may be detected many years later, but very

few have corresponding clinical weakness or important

limitation in activities of daily living at that time point

[27]. Occasionally, some patients with critical illness

polyneuropathy show sensory deficits at 2 months after

ICU discharge; very few ICU patients remain troubled by

this at 6 months. Our anecdotal clinical experience in

follow-up suggests the incidence of severe critical illness

polyneuropathy is reduced compared with that reported

in the late 1980s and early 1990s, but further confirmatory

data are required to quantify this impression.

Exercise is central to the rebuilding of wasted muscle

so other clinical conditions need to be optimized to

foster mobility. Treatment of heart failure, angina, asthma

and joint disease must be complementary. Similarly,

510 Critical care outcomes

psychological problems, especially those that affect

adequate sleep, must be adequately treated. Only in a

very small proportion of patients without preexisting pul-

monary disease does persistent respiratory impairment

impede recovery. The well being of even the most

severely affected chronic obstructive pulmonary disease

patient is improved if they survive the ICU and our success

rate at smoking cessation with a rehabilitation programme

has been impressive [28]. While we were pleased with the

physical recovery in our ICU patients, we realized that the

psychological consequences of lack of memory and recall

were compromising outcomes and this gave us Lesson 2.

Lesson 2: recall of the intensive care unit andmemory difficulties are a problemWe soon realized that many patients do not have a recall

of their illness or ICU stay, and this results in a poor

understanding of their post-ICU physical state and why

they are so weak and easily fatigable. Patients have

commented that they cannot understand why those

around them say they look so good and are doing so well

when they feel so weak. Alteration in physical appearance

also has an important impact, and patients are distressed

by what they see in the mirror if they are not prewarned

and offered an explanation. The most minor of problems

(a new scar) can have great importance if they do not

understand why. Simple explanation of taste changes,

hair loss and skin markings are necessary. A careful

clinical review may identify more serious problems such

as osteoporotic fractures, ossification, joint stiffness,

specific neuropathies, small bladder syndrome and sexual

dysfunction, and each of these require education. Even

before any specific therapy is delivered, the act of provid-

ing an explanation is central. The lack of recall and a

failure to realize how weak they are, especially when

assisted by nurses and physiotherapists while in hospital,

gives patients falsely high expectations of their ability,

and it is often only when they fall or go home that the true

extent of their weakness becomes apparent.

In addition to the lack of appreciation of physical debility

related to their critical illness, we soon recognized that a

patient’s memory and recall of their ICU experience

was severely compromised, and that it may be harmful

to have absent memory for what happened [29]. Many of

the sickest patients have no real factual recall of their

illness or the events immediately preceding it. Major

trauma patients ventilated in intensive care can rarely

remember the accident and severe sepsis patients do not

recall their hospital admission. This memory loss is not

simply confined to the periods of deep sedation, but can

persist intermittently for some time. This loss of a real

factual recall of their illness experience means that they

have gaps in their understanding of what has happened to

both themselves and their family [30]. As a consequence

of this, their expectations for rate of recovery may be

unrealistic and may lead to disappointment, even when

recovery is proceeding well. Even while still in the ICU

and ostensibly awake and aware during recovery, many

patients may not remember faces or any information or

explanation given to them. Memories change with time

and great care must be taken in the interpretation of what

they recall. This latter point may represent an important

limitation in many questionnaire-based studies that use

single time points. In a large follow-up study in Portugal,

Granja et al. [31] obtained 6-month outcome data on

464 out of 1433 patients admitted. Despite some loss

to follow-up, they were able to show that 38% had no

recall of any of their ICU stay. Ninety-three percent of

those whose recall was more intact remembered it as a

calm and friendly environment. Unreal experiences can

be pleasant, unpleasant or sometimes frightening. Fifty-

one percent of patients experienced dreams and night-

mares during their ICU stay; of these, 14% were of such a

character to still disturb their life 6 months later. Dreams,

nightmares, and difficulties in concentrating and remem-

bering recent events were independently associated with

a reduced quality of life. Apart from the observation that

patients did not know what was done to them when they

were unable to give consent [32], we realized there was a

much deeper consequence of having a period of amnesia

replaced by false memories and false experiences [33],

and this led to Lesson 3.

Lesson 3: acute stress reaction, panic attacksand posttraumatic stress disorder may be aconsequence of memory deficitsWe realized that patients may have no real recall of

intensive care and their experience may be replaced

by delusional, often paranoid, memories [34], and that

anxiety and panic attacks were more frequent than we

appreciated [35]. It became apparent that those patients

who experienced uncontrolled nightmares after the ICU

were at greatest risk of converting acute stress and panic

to posttraumatic stress disorder (PTSD). While we recog-

nized that some patients may have only pleasurable

experiences, it was the content of their memories that

could have an impact on their emotions and that prior

experience probably contributed to this. For instance,

only patients of an age to have experienced the reality of

the Second World War had delusions containing military

themes when admitted over a period of intensive media

exposure of a bombing campaign in Kosovo [36]. Con-

trary to the established belief that it was the real factual

experiences of intensive care that were traumatic, we

developed the hypothesis that the traumatic memory

could be of a delusional nature and also demonstrated

that patients who sustain distressing delusional experi-

ence without any real, factual experience were at

increased risk of developing acute stress reactions that

may progress to PTSD [37]. The key to this was realizing

that the delusional experiences appear very real and

Lessons from 20 years of follow-up Griffiths and Jones 511

frightening while the absence of real experience denies

them the protective reassurance and feeling of safety

provided by a contact with a nurse or other ICU staff.

Procedures that we may think unpleasant and distressing

may not be recalled or their impact may not be considered

distressing because they are associated with human con-

tact, support or comfort (e.g. endotracheal suctioning).

We underestimated that there was a feeling of safety for a

patient to see a nurse around them frequently. It is

important to stress that particular delusional beliefs by

patients that something happened may be very strongly

held even if they can be shown to be completely ficti-

tious. In addition, many so-called real experiences may

be misinterpreted. The suggestion that being awake and

aware was in some way protective against PTSD was

suggested through a retrospective study of a subgroup of

patients who had undergone sedation breaks [38]. The

prevalence of PTSD is difficult to ascertain and varies

considerably across published studies (5%–63%) and this

may reflect patient case mix, and the use of different

PTSD symptom scores and diagnostic tools [39��]. In a

recent observational study involving five ICUs across four

countries in Europe, the rate of defined PTSD was 9.2%

(range 3.2–14.8%) [40��]. Independent of case mix and

illness severity, the factors found to be related to the

development of PTSD were recall of delusional mem-

ories, prolonged sedation, a history of preexisting psycho-

logical problems such as anxiety or depression and

physical restraint with no sedation. Curiously, those with

PTSD related to physical restraint had no recall of their

restraint, suggesting that it may be related to a state of

delirium. The incidence of delirium varied between units

and its development was more common in patients

receiving high daily doses of benzodiazepines or opiates.

We realized that we were under-recognizing delirium and

that led us to Lesson 4.

Lesson 4: the withdrawn patient in theintensive care unit may not be depressed, butmay be deliriousThe general belief that the withdrawn patient in the

ICU was depressed had never been formally tested, yet

antidepressants were being used liberally; however, the

extent of the memory problems coupled with delusional

experiences that had occurred in quiet withdrawn

patients made us appreciate that perhaps we were

missing patients with hypoactive delirium. This was

illustrated by a withdrawn yet cooperative patient who

suffered a Capgas delusion where, due to a failure of face

recognition, she developed the delusion that her family

and nurses had all been replaced by aliens [41]. It is now

recognized that using bedside screening tools [42], the

incidence of delirium in some groups of patients is as high

as 80% [43] and it is the hypoactive form that dominates,

particularly in the elderly [44��]. Assessing the incidence

of delirium is challenging and limited by the nature of the

screening tool and patient case mix. In a large mixed ICU

population, 31.8% of 764 patients developed delirium

[45��], and a history of hypertension, alcoholism, severity

of illness and sedative/analgesia use increased this risk.

The recognition that there is an association between the

presence of delirium and development of later cognitive

problems [46] attests to the central nervous system being

involved in multiple organ failure, and leads to Lesson 5.

Lesson 5: we do not routinely recognizecognitive dysfunctionIncreasingly, post-ICU cognitive deficits are being

described. In both a 1- and 2-year follow-up of acute

respiratory distress syndrome survivors, half (47%) had

neurocognitive impairment at 1 year and, despite some

improvement, this persisted to 2 years [47]. Strikingly

persistent deficits occurred in memory and attention,

such that patients had problems in making decisions

and quick processing leading to ‘slips of action’, e.g.

putting the kettle on without filling it with water. In

addition, deficits were noted in executive functioning. A

detailed study of 51 patients [48] demonstrated similar

defects in executive function at 3 and 9 months after

ICU discharge. At 3 months, one-third of the patients

were functioning at a level equivalent to or below

the lowest performing 5% of a normal population. At

9 months, 4% were so severely impaired that performance

was still below normal. The question of whether cogni-

tive dysfunction was adequately recognized and its

natural history once detected was studied in a cohort

of 150 general ICU patients (length of stay greater than

6 days) who were awake, ventilated through a tracheost-

omy and screened for delirium using the Confusion

Assessment Method for the Intensive Care Unit [49��].

Only 20% of these patients were found not to be delirious

and had sufficient attention to undertake the touch-

screen computerized Cambridge Neuropsychological

Test Automated Battery. These patients, however, still

showed significant problems with strategic thinking and

problem solving with scores below the 25 centile for

normal performance. These patients did not fulfil criteria

for delirium (as stated previously), had no obvious neuro-

logical signs and were not giving rise to any clinical

concern. One week post-ICU discharge, 20% still could

not solve any problems and half had memory deficits. At

2 months, 50% still demonstrated difficulties with pro-

blem solving, while a third remained below the 25 centile

for performance. The impact of neurocognitive dysfunc-

tion and the resultant dependence of ICU patients on

relatives for assistance became even more apparent, and

led us to Lesson 6.

Lesson 6: relatives have problems too andneed help and understandingThat relatives may be very stressed by their experience

during ICU is well recognized, but we realized that this

512 Critical care outcomes

had later consequences and might affect the caregivers’

ability to act as support during recovery [50]. A frequent

early observation from our group was that a conflict arises

during recovery between the patient who does not

appreciate the severity of the illness due to a limited

or distorted recall and the relative who is stressed by the

reality of the life-threatening illness and vivid recall of

events. This may result in the relative being frightened of

a recurrence of the critical illness, an inability to discuss

the events in ICU and the behaviour of being overly

protective to the point of compromising rehabilitation

[51]. We recognized early that relatives also need help to

cope, and designed the rehabilitation package to include

their participation and encourage their joint attendance at

clinic follow-up [25].

An additional problem for recovering patients is that

family members can also develop PTSD. During a reha-

bilitation study we observed that at 6 months a significant

proportion of relatives (49%) expressed very high levels

of the symptoms related to PTSD [52], and that there was

a close relationship between symptom levels in patients

and their relatives. This is not surprising considering the

extreme stress and life-threatening experience they

witness, but the increased incidence may also reflect

familial risks. Another study showed that a third of family

members interviewed 3 months after ICU exhibited

stress symptoms consistent with a risk of developing

PTSD [53]. We realized the importance of family invol-

vement at all stages and that they could do things to

benefit the patient, and this led us to our final lesson.

Lesson 7: a prospective nurse and relativekept diary may be used as a post-intensivecare unit therapyOne solution to ease the conflict in recall between the

patient and relative, and to enable them both to have a

common shared ownership of the experience, comes

through keeping a diary with photographs while the

patient is in the ICU. This idea originated from Sweden

[54]. The diary should be written prospectively by staff

and family, and is given to the patient afterwards when

they are ready. The language used is everyday and any

medical words are explained. Periods of confusion or

agitation are also written about with possible reasons

for these. A small pilot study showed that patients felt

that the diary helped them come to terms with their

illness and recall what had happened [55]. The ICU diary

helps fill in the lost time for those with poor recall of the

ICU stay. The experience of such diaries continues to be

encouraging and contribute to patients’ understanding,

goal setting during recovery, improved family communi-

cation and is a source of comfort for the bereaved [56].

During an observational study, we noticed that the pro-

vision of an ICU dairy may reduce the level of symptoms

of PTSD experienced by patients after critical illness

[57]. Currently, we are involved in a multicentre ran-

domized European study by the RACHEL group to

explore the application and timing of diary use as an

interventional therapy to improve neuropsychological

outcomes. The proposed mechanism for its benefit is

as a natural cognitive behavioural therapy where patients

read their diary over and over of their own accord, and in

doing so reduce the ability of their memories to cause

them distress. If proven, this may provide the ICU team

with a powerful tool to help patients come to terms with

their illness and participate in cognitive behavioural

therapy.

ConclusionIntensive care leaves a physical and neuropsychological

legacy for patients and relatives. Our 20-year experience

from patient and carer feedback suggests that active

support and rehabilitation for patients and family care-

givers is much needed following intensive care.

References and recommended readingPapers of particular interest, published within the annual period of review, havebeen highlighted as:� of special interest�� of outstanding interest

Additional references related to this topic can also be found in the CurrentWorld Literature section in this issue (p. 607).

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39

��Jackson JC, Hart RP, Gordon SM, et al. Posttraumatic stress disorder andposttraumatic stress symptoms following critical illness in medical ICUpatients: assessing the magnitude of the problem. Criti Care 2007; 11:R27.

A review of the very mixed and varied published evidence, concluding that whilePTSD is clearly a problem its true incidence is yet to be defined.

40

��Jones C, Backman C, Capuzzo M, et al. Precipitants of post-traumatic stressdisorder following intensive care: a hypothesis generating study of diversity incare. Intensive Care Med 2007; 33:978–985.

A new study from several European sites that explores the various precipitants ofPTSD, reflecting the differences in sedation and restraint practice within Europe.

41 Jones C, Griffiths RD, Humphris GM. A case of Capgras delusion followingcritical illness. Intensive Care Med 1999; 25:1183–1184.

42 Ely EW, Margolin R, Francis J, et al. Evaluation of delirium in critically illpatients: validation of the Confusion Assessment Method for the IntensiveCare Unit (CAM-ICU). Crit Care Med 2001; 29:1370–1379.

43 Ely EW, Gautam S, Margolin R, et al. The impact of delirium in the intensivecare unit on hospital length of stay. Intensive Care Med 2001; 27:1892–1900.

44

��Peterson JF, Pun BT, Dittus RS, et al. Delirium and its motoric subtypes:a study of 614 critically ill patients. J Am Geriatr Soc 2006; 54:479–484.

A large study that helpfully describes the forms of delirium we can expect to see.Reminds us that in the elderly the hypoactive form is much more common and withthe increasing numbers of elderly being admitted to ICU the incidence will onlyincrease.

45

��Ouimet S, Kavanagh BP, Gottfried SB, Skrobik Y. Incidence, risk factors andconsequences of ICU delirium. Intensive Care Med 2007; 33:66–73.

A very large population studied using a different screening tool that confirms riskfactors and associations, and that about one-third of patients will experiencedelirium.

46 Jackson JC, Hart RP, Gordon SM, et al. Six-month neuropsychologicaloutcome of medical intensive care unit patients. Crit Care Med 2003; 31:1226–1234.

47 Hopkins RO, Weaver LK, Pope D, et al. Neurophysiological sequelae andimpaired health status in survivors of severe acute respiratory distresssyndrome. Am J Respir Crit Care Med 1999; 160:50–56.

48 Sukantarat KT, Burgess PW, Williamson RCN, Brett SJ. Prolonged cognitivedysfunction in survivors of critical illness. Anaesthesia 2005; 60:847–853.

49

��Jones C, Griffiths RD, Slater T, et al. Significant cognitive dysfunction innondelirious patients identified during and persisting following critical illness.Intensive Care Med 2006; 32:923–926.

Tests used touch screen computer software and showed severe cognitivedysfunction in awake non sedated patients ventilated through tracheostomieswho were not delirious at the time of testing (although most likely had beendelirious at some stage since many had to be excluded from study due to ongoingdelirium).

50 Jones C, Hussey R, Griffiths RD. Social support in the intensive care unit. Br JIntensive Care 1991; 1:66–69.

51 Jones C, Griffiths RD. Social support and anxiety levels in relatives of criticallyill patients. Br J Intensive Care 1995; 5:44–47.

52 Jones C, Skirrow P, Griffiths RD, et al. Post-traumatic stress disorder-relatedsymptoms in relatives of patients following intensive care. Intensive Care Med2004; 30:456–460.

53 Azoulay E, Pochard F, Kentish-Barnes N, et al. Risk of posttraumatic stresssymptoms in family members of intensive care unit patients. Am J Respir CritCare Med 2005; 171:987–994.

54 Backmann CG, Walther SM. Use of a personal diary written on the ICU duringcritical illness. Intensive Care Med 2001; 27:426–429.

55 Bergbom I, Svensson C, Berggren E, Kamsula M. Patients’ and relatives’opinions and feelings about diaries kept by nurses in an intensive care unit:pilot study. Intensive Crit Care Nurs 1999; 15:185–191.

56 Combe D. The use of patient diaries in an intensive care unit. Nurs Crit Care2005; 10:31–34.

57 Jones C, Capuzzo M, Flaatten H, et al. ICU diaries may reduce symptoms ofposttraumatic stress disorder. Intensive Care Med 2006; 32 (Suppl 1):S144.