J Head Trauma Rehabil Treatment of Unawareness of …...J Head Trauma Rehabil Vol. 29, No. 5, pp....

J Head Trauma RehabilVol. 29, No. 5, pp. E9–E30

Copyright c© 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins

Treatment of Unawareness of Deficitsin Patients With Acquired Brain Injury:A Systematic Review

Anne-Claire Schrijnemaekers, MSc; Sanne M. J. Smeets, MSc; Rudolf W. H. M. Ponds, PhD;Caroline M. van Heugten, PhD; Sascha Rasquin, PhD

Objective: To review and evaluate the effectiveness and methodological quality of available treatment methodsfor unawareness of deficits after acquired brain injury (ABI). Methods: Systematic literature search for treatmentstudies for unawareness of deficits after ABI. Information concerning study content and reported effectiveness wasextracted. Quality of the study reports and methods were evaluated. Results: A total of 471 articles were identified;25 met inclusion criteria. 16 were uncontrolled or single-case studies. Nine were of higher quality: 2 randomizedcontrolled trials, 5 single case experimental designs, 1 single-case design with pre- and posttreatment measurement,and 1 quasi-experimental controlled design. Overall, interventions consisted of multiple components includingeducation and multimodal feedback on performance. Five of the 9 high-quality studies reported a positive effect ofthe intervention on unawareness in patients with some knowledge of their impairments. Effect sizes ranged fromquestionable to large. Conclusion: Patients with ABI may improve their awareness of their disabilities and possiblyattain a level at which they personally experience problems when they occur. At present, because of lack of evidence,no recommendation can be made for treatment approaches for persons with severe impairment of self-awarenessin the chronic phase of ABI. We recommended developing and evaluating theory-driven interventions specificallyfocused on disentangling the components of treatment that are successful in improving awareness. High-qualityintervention studies are urgently needed using controlled designs (eg, single-case experimental designs, randomizedcontrolled trials) based on a theoretic perspective with a detailed description of the content of the intervention andsuitable outcome measures. Key words: awareness, brain injuries, intervention studies, literature review, rehabilitation

ACQUIRED BRAIN INJURY (ABI) can lead toimpairments in physical, emotional, cognitive,

and social abilities. Diminished awareness of theseimpairments—a well-known clinical problem followingABI—is seen as compromise of the ability to appraiseone’s strengths and weaknesses and the implications forlife, presently and in the future.1,2 Reported prevalence

Author Affiliations: Rehabilitation Centre Adelante, Department ofBrain Injury, Hoensbroek (Ms Schrijnemaekers and Drs Rasquin, andPonds); Adelante knowledge centre, Hoensbroek (Dr Rasquin); School forMental Health and Neuroscience (MHeNS), Department of Psychiatryand Neuropsychology, Maastricht University (Ms Smeets and Drs Pondsand van Heugten); Department of Medical Psychology, MaastrichtUniversity Medical Center (MUMC), Maastricht (Dr Ponds); andDepartment of Neuropsychology and Psychopharmacology, Faculty ofPsychology and Neuroscience, Maastricht University (Dr van Heugten),The Netherlands.

Supplemental digital content is available for this article. Direct URL citationappears in the printed text and is provided in the HTML and PDF versionsof this article on the journal’s Web site (www.headtraumarehab.com).

The authors declare no conflicts of interest.

Corresponding Author: Anne-Claire Schrijnemaekers, MSc, RehabilitationCentre Adelante, Department of Brain Injury, Zandbergsweg 111, 6432 CCHoensbroek, The Netherlands ([email protected]).

DOI: 10.1097/01.HTR.0000438117.63852.b4

ranges from 30% to 97%, depending on multiple factorsincluding the measurement instrument used, severityof injury, and amount of time since injury.1,3–9 Areasof diminished functioning about which patients maylack awareness include cognition, behavior, and inter-personal skills as well as the effects their behavior haveon others.10 Frontal lobe dysfunction has often beenlinked to impaired awareness of deficits, but currentlythere is no clinical consensus regarding the pathogenesisunderlying this phenomenon.10–12

The concept of impaired awareness can be dividedinto different types of impairment. A practical modeldefined by Crosson et al13 outlines a 3-stage hierarchi-cal model in which intellectual awareness represents theability to understand that a function is impaired or to un-derstand the complications caused by the impairment.Emergent awareness is the ability to recognize a problemwhen it is occurring, which requires the person to reacha level of intellectual awareness similar to that before in-jury. Anticipatory awareness is the ability to foresee thata problem will occur as a result of having some typeof deficit. Other models concerning impaired aware-ness of deficits after ABI also describe 3 componentsof awareness and show considerable overlap.1,14–18 In

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

E9

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E10 JOURNAL OF HEAD TRAUMA REHABILITATION/SEPTEMBER–OCTOBER 2014

2 models,16,17 the psychological factor of denial isprominent. Taken together, these models include cog-nitive components (basic cognitive abilities to perceive,understand, and recognize situations), higher-order cog-nitive components (self-regulation and anticipation),and a psychological component (with denial on 1 sideof the spectrum and acceptance on the other).

The implications associated with impaired awarenessof deficits include diminished motivation for treatment(as the patient may not recognize or acknowledge theneed for intervention),19 worse treatment adherence andperformance,20,21 and an unfavorable short- and long-term employment outcome.22,23 By contrast, patientswith more intact intellectual awareness achieve betterindependent living skills.24 Herein lies the challenge oftreating patients with awareness problems.

Currently, there are no well-established clinical guide-lines for treating unawareness of deficits after ABI,25 de-spite an array of studies that have evaluated differenttreatments to improve awareness of deficits. The objec-tive of this article is to review the available treatmentmethods for impaired awareness and to provide a com-prehensive summary of their effectiveness. The currentreview differs from previous reviews26–28 in that it hasno restriction on the type of brain injury, intervention,study design, and number of participants; it comprises abroad spectrum of research of interventions that aim toimprove awareness of deficits. The following questionsare addressed: (i) which interventions have been investi-gated and what are their specific characteristics and (ii)how effective were these interventions?

METHODS

Selection of articles

A systematic literature search was performed using theelectronic databases PsycINFO (1887 to October 2012),PubMed (1953 to October 2012), Embase (1989 toOctober 2012), The Cochrane Library (1890 to October2012), and PsychBITE (1940 to October 2012). Free textwords as well as index terms were combined. The searchstrategy used 3 categories: diagnosis (ABI), the specificcondition (unawareness of deficits), and intervention.The search was limited to human studies (adolescentsand adults) and articles published in peer-reviewed jour-nals. See Table, Supplemental Digital Content 1, avail-able at http://links.lww.com/JHTR/A87, for a detaileddescription of the specific search strategies used for eachdatabase.

Articles were selected if they described an interven-tion study for improving awareness of deficits in adults(16 years or older) with ABI, and if they had a studydesign with at least pre- and postintervention measure-ments. Studies published in languages other than En-glish, Dutch, German, or French were excluded. Further-

more, studies were excluded if the primary aim of theintervention was related to visuospatial or somatosen-sory neglect. Neglect is based on impaired mechanismsof visual attention and, hence, represents a specific de-marcated area that lies outside the scope of this review.

Studies were independently selected on the basis oftitle, abstract, and full text by the first 2 authors (A.C.S.and S.S.). In cases of disagreement, a third author (S.R.)made the final decision. The reference lists of the se-lected articles were examined for other potentially rele-vant studies. If appropriate, the specific study cited wastracked down and included in the review.

Data extraction

Data extraction was based on the checklist of itemsto consider from the Cochrane manual,29 together withdata extraction methods from similar reviews.30,31 Thefollowing study characteristics were extracted from thearticles: design of the study, number of patients, type ofintervention, effects on the awareness, and functionaloutcome measures. The overall effect of each interven-tion was summarized as positive (+), no effect (0), ornegative (−).32 Results were considered to be positivewhen statistically significant at the P < .05 level. If nostatistical test results were available, the interpretationof the effect was based on the interpretations made bythe authors of the study in question.

In addition, we calculated effect sizes.For independent group studies (eg, RCTs),the standardized difference between means,Hedge’s g, was calculated where possible (ef-fect size = [(Meanexperimental group, postmeasurement −Meanexperimental, pre)/SDexperimental, pre] − [(Meancontrol, post

−Meancontrol, pre)/SDcontrol, pre]).33 An effect size of 0.2is considered small, 0.5 medium, and 0.8 large.34

For single-case studies (eg SCED), the percentage ofnonoverlapping data (PND)35 was used as a measure ofeffect size. For calculating the PND, the highest datapoint in the baseline phase needs to be identified. ThePND is then determined by calculating the percentageof data points during the intervention phase exceedingthis level. A PND smaller than 50% reflects minimallyeffective treatment, 50% to 70% reflects questionableeffectiveness, 70% to 90% is fairly effective and morethan 90% reflects a highly effective treatment. Althoughthe PND is often used to determine the effect of treat-ment in single-case studies, this method is sensitive tofloor/ceiling effects and lacks discrimination abilityfor highly effective treatments (eg, cannot detect slopechanges). This should be taken into account wheninterpreting the PND.

Further data extractions focused on both patient andintervention characteristics. Patient characteristics in-cluded age and sex, in- or outpatient setting, etiology


Treatment of Unawareness of Deficits in Patients With ABI E11

of ABI, time since onset, severity of ABI, and baselinefunctioning at the beginning of treatment. The follow-ing intervention characteristics were extracted: aim(s)of intervention, content of intervention, disciplines in-volved, and duration/intensity of the intervention.

Quality assessment

Studies were divided into high- and moderate-qualitystudies following predefined criteria. Studies were con-sidered to be of high quality if they used an indepen-dent groups pre-post design (ie, patients were assignedto treatment and control groups and assessed pre- andposttreatment) or if they used single subject designswith multiple pre- and posttreatment measurements (ie,single-case experimental designs). Studies were consid-ered to be of moderate quality or less if they did notfulfill the aforesaid criteria (ie, single group pre-post de-signs or single-case designs with 1 pre- and posttreatmentmeasurement). The results of the high-quality studiesare thoroughly described. The results of the moderate-quality studies are described in summary. To accuratelyprovide a critical appraisal of the validity and applicabil-ity of the reviewed results, treatments were assessed us-ing the CONSORT 2010 checklist of information thatis to be included when reporting an RCT36 and theCONSORT Statement extension for nonpharmacologictrials.37

RESULTS

The literature search identified 471 articles that wereevaluated according to the aforesaid inclusion criteria.Ultimately, 25 articles met the full inclusion criteria andwere used for this review (see Figure 1). Reasons forexclusion included the following: the studies did notaddress awareness of deficits (eg, studies of awareness ofrisk factors for specific diseases in the normal popula-tion), the studies primarily focused on visuospatial orsomatosensory neglect, or the studies were not interven-tion studies.

Of the 25 included studies, 2 were RCTs,25,38 6were single-case experimental designs,39–44 1 was aquasi-experimental controlled trial,45 10 were uncon-trolled pre-post measurements,6,46–54 and 6 were casestudies.55–60 Nine studies fulfilled the criteria to be con-sidered high quality and are further presented in thetables. Studies of moderate quality are briefly describedin the text.

Study characteristics

High-quality studies

The study characteristics of the 9 high-qualitystudies are described in Table 1. The high-qualitystudies consisted of single-case experimental designs

Included articles based on reference in included

articles (n=2)

Systematic literature search: (n=471)

-PubMed: 135-PsychINFO: 86- EMBASE: 112

-Cochrane Library: 41-PsycBITE: 97

Potentially relevant articles (n=343)

Articles selected on abstract (n=42)

Exclusion of duplicates (n=128)

Selected articles for final review (n=25)

Exclusion based on title or abstract (n=301)

Exclusion based on full text (n=18)

No full text available (n=1)

Figure 1. Flowchart of the selection of articles.

(N = 4),39–41,43 RCTs (N = 2),25,38 a quasi-experimentalcontrolled design (N = 1),45 and single-case designs withmultiple pre- and posttreatment measurements (N =2).42,44 The number of participants in the experimentalgroups ranged from 1 to 17 with a mean of 7. Threestudies reported follow-up measurements.42–44

Awareness was measured with the Awareness Ques-tionnaire (AQ) discrepancy score (the difference inscores between the patient and an informant; N =4),38,39,42,44 the AQ patient score (N = 1),45 theself-awareness of deficit interview (SADI; N = 2),25,39

the self-regulation skills interview (SRSI; N = 3),38,42,44

the assessment of awareness of disabilities (N = 2),38,41

the Competency Rating Scale difference score (N =1),43 the difference in predicted versus actual scores ona memory test (N = 1),40 and the percentage of correctanswers on ABI questions (N = 1).43


www.headtraumarehab.com

E12 JOURNAL OF HEAD TRAUMA REHABILITATION/SEPTEMBER–OCTOBER 2014T

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Treatment of Unawareness of Deficits in Patients With ABI E13T

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Other outcome measures focused on sustainedattention,41 executive functioning,42,44 neglect,41 motorand process skills,38 activities of daily living,25,39 level offunctional independence,25 community integration,38

feelings of competency,43 and quality of life.45 Thespecifics of the functional outcome measures appear inTable 1.

In 3 of the 9 studies, the effect of the interventionon awareness was statistically significant (Hedge’s g =1.0-1.7; PND 100%).25,38,41 In 2 studies, the effects werenot statistically tested, but the authors reported a posi-tive treatment effect on awareness (PND 36%-81%).40,43

However, in these studies, the positive treatment effectsappeared to be task specific.40,43 Statistically significantimprovements on other outcome measures were seen infunctional independence (Hedge’s g = 0.5),25 activitiesof daily living (Hedge’s g = 0.8),25 and process skills(Hedge’s g = 1.0).38

Moderate-quality studies

The moderate-quality studies consisted of uncon-trolled pre-post studies (N = 10)6,46–54 and single-casedesigns (N = 6).55–60 The mean number of participantswas 22, and sample sizes ranged from 1 to 86. Aware-ness outcome was mostly determined using the SADI(N = 4)51,52,57,58 and the Patient Competency RatingScale (N = 3),6,57,58 the discrepancy between estimatedand actual task performance (N = 3),54,59,60 the AQ(N = 2),46,51 the Clinicians Rating Scale for evaluatingImpaired Self-Awareness and Denial of Disability afterbrain injury (N = 2),46,58 and the SRSI (N = 2).47,50

In 7 of the 16 moderate-quality studies, the effectof the intervention on at least 1 awareness outcomewas statistically significant (P < .05).46–48,50,51,53,54 In5 studies, there was an observed (ie, not statisticallytested) positive effect on awareness.55,57–60 However,here again these observed positive effects were relatedto task-specific improvement55,58–60 and reflectedonly in 1 study an increase in awareness of deficits.57

Positive effects on other outcomes included decreaseddepressive symptoms46 and distress,48,51 decreasedbehavioral problems,50 increased psychosocial well-being47 and psychosocial functioning,50 strategy use,47

self-regulation,50 and a more cooperative attitude toaccept assistance or participate in treatment.56,58

Patient characteristics


Detailed patient characteristics of the high-qualitystudies are described in Table 2. All participants wereadults aged 20 to 76 years; the approximate mean agewas 45 years, and the majority (median 63%) were men.In 5 of the 9 high-quality studies, patients experienced a

TBI25,39,42,44,45 and in 1 study, the patients had a stroke.41

In the remaining studies, the etiology of the brain in-jury was mixed (eg, TBI, stroke, anoxia).38,40,43 Sever-ity of brain injury was mentioned in 4 studies25,38–40

and ranged from moderate to severe on the basis of theGlasgow Coma Scale, posttraumatic amnesia, or dura-tion of coma. In 7 studies, patients were in the chronicphase after injury (>6 months postinjury) at the start ofthe awareness intervention.38–40,42–45 In addition, in 7studies, patients received outpatient treatment.38–42,44,45

In the 2 studies in which patients were hospitalized, 1group was in the subacute phase25 and the other was inthe chronic phase43 after injury.

The high-quality studies differed in patients’ levelof baseline functioning prior to treatment. Cheng andMan25 reported moderate baseline Functional Indepen-dence Measure scores (experimental group score = 67;control group score = 75) and Lawton instrumentalactivities of daily living (IADL) scores (experimentalgroup score 4.4; control group score 4.6). Tham41 re-ported the baseline score on the Mini-Mental State Ex-amination (MMSE), which ranged from 22 to 27. (SeeDocument, Supplemental Digital Content 2, availableat http://links.lww.com/JHTR/A88, for the specifics ofthese scales). In the other studies, patients were inde-pendent in basic activities of daily living38 or had basicself-care skills,42,44 had difficulty managing multistepIADL,42 participated in volunteer work,39 showed globalcognitive decline,39 had severe to moderate sensory andmotor deficits,41 had a moderate level of disability,44 orshowed serious aggressive behavior.43 In 2 studies, nobaseline level of functioning was reported.40,45

Baseline levels of impaired awareness varied acrossstudies. In 2 studies, therapists recommended patientsfor awareness treatment based on clinical judgment ofevidence of impaired self-awareness.38,43 In one study,patients were included if they underestimated theirmemory deficits (incongruence between predicted mem-ory performance and actual performance),40 and in an-other study, patients had a SADI score greater than 0(mean SADI score at baseline was 5).25 Furthermore,studies reported high SRSI scores (range: 6–10),42,44 highSADI scores (8),39 and a large difference score on the AQ(range: 22–30)42 at baseline. In 2 studies, baseline levelsof awareness were not specified.41,45


In moderate-quality studies, patients had an approxi-mate mean age of 40 years (range: 19–70 years) and themajority (median 68%) were male. Most studies usedpatients with different types of ABI (eg, TBI, stroke, hy-poxia, infection).6,46–48,50–54,56–58,58 Three studies usedpatients with TBI,55,59,60 and 1 study included only pa-tients who had a stroke.49 Severity of brain injury was



AB

LE2

Pat

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char

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Au

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Me

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E20 JOURNAL OF HEAD TRAUMA REHABILITATION/SEPTEMBER–OCTOBER 2014T

AB

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Pat

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No.

3:42

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No.

4:49

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spec

ified

Mod

erat

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asic

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tp://

links

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.com

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TR/A

88.

noted in 9 of the 16 studies.6,46,48,50,51,55,57–59 The major-ity of participants had a severe brain injury. Mean timepostonset varied from 8 weeks to 8 years. In 10 stud-ies, patients were in the chronic phase after injury6,46,

47,48,50–52,55,57,60; in 3 studies, patients were in the posta-cute phase and in 1 study, chronicity was mixed53; in2 studies, time since injury was not specified.54,59

Intervention characteristics


The detailed characteristics of the interventions fromhigh-quality studies are described in Table 3. All in-terventions consisted of more than 1 component. Themajority used some form of psychoeducation aboutdeficits, often in combination with feedback on per-formance. Education was given by presenting declara-tive knowledge about deficits,25,39,43 experiential func-tional exercises guided by therapists,25,41,42,45 or byusing a board game with a question-answer-rewardformat.43 Feedback was given verbally,25,40 visually,40 oraudiovisually,39,41 by positive reinforcement,38,40,43,42,44

by nonconfrontational discussion between patient andresearcher about task performance,38,39,41,42 or by self-evaluation.42,44

Occupational therapy was the major discipline in-volved in the studied interventions.38,39,41,42,44 In 1study, a psychologist was involved.43 In 3 studies, thediscipline was not stated.25,40,45

Treatment duration and intensity varied across the 9studies, ranging from 3 to 12 weeks and the total numberof sessions ranging from 6 to 40 (45 minutes-2 hours).

The treatment programs were effective in improvingawareness in 525,38,40,41,43 of the 9 high-quality studies.Therefore, they are described more thoroughly.

Goverover et al38 investigated an occupation-basedtraining protocol. Twenty patients with some evidenceof self-awareness performed IADL tasks. The patients inthe experimental group had to predict their performancebefore a task, then estimate and evaluate their perfor-mance afterward. They were stimulated to think of astrategy to improve their task performance. Participantshad learned to improve IADL activities and showed bet-ter self-regulation. The improvement in self-regulationwas significant (Hedge’s g = 1.0). Self-regulation was de-fined as having awareness, the readiness to change andformulating strategy behaviors.63 The patients in thecontrol group completed the IADL tasks without theawareness intervention. On specific awareness measures,no significant treatment effect was observed.

Tham et al41 investigated awareness in 4 women withmild to moderate cognitive disabilities and severe sen-sory loss. Patients were fewer than 10 weeks poststrokeand had intellectual awareness at baseline. The 4-weekintervention phase consisted of training purposeful and




TA

BLE

3In

terv

entio

nch

arac

teri

stic

s

Au

tho

r/s

Aim

of

inte

rve

nti

on

Inte

rve

nti

on

(E/C

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iscip

lin

es

inv

olv

ed

Du

rati

on

/In

ten

sit

y

Cha

ndra

shek

aran

dB

ensh

off45

Tode

term

ine

ifpe

rson

sw

ithTB

Iw

hopa

rtic

ipat

ein

6w

eeks

ofth

eQ

ualit

yof

Life

and

Aw

aren

ess

Trai

ning

diff

ersi

gnifi

cant

lyfo

rmth

ose

who

dono

tpa

rtic

ipat

ein

the

way

that

(1)t

hey

perc

eive

qual

ityof

life

and

(2)t

hey

are

awar

eof

thei

rde

ficits

.

E:6

wk

Qua

lity

ofLi

fean

dA

war

enes

sTr

aini

ng(Q

LAT)

.Tra

inin

ggo

als

and

activ

ities

wer

ees

tabl

ishe

don

the

basi

sof

the

Wis

cons

inH

SS

Qua

lity-

of-L

ifeIn

vent

ory.

Aw

aren

ess

trai

ning

goal

san

dac

tiviti

esw

ere

base

don

Ow

nsw

orth

etal

’s61

wor

kboo

kon

grou

pac

tiviti

esfo

rpe

rson

sw

ithTB

I.C

:no

QLA

T,pl

ayin

gbo

ard

gam

esan

dca

rds

ina

grou

p.

Not

spec

ified

E:6

sess

ions

in6

wk.

Eac

hse

ssio

nw

as1

han

d30

min

inle

ngth

with

10-m

inbr

eak.

C:6

sess

ions

of11 / 2

hdu

ring

6w

k

Che

ngan

dM

an25

Man

agem

ent

ofim

paire

dse

lf-aw

aren

ess

E:A

war

enes

sIn

terv

entio

nP

rogr

am:

educ

atio

nto

enha

nce

obje

ctiv

ekn

owle

dge

abou

tde

ficits

;ex

perie

ntia

l,fu

nctio

nale

xerc

ises

toen

hanc

epa

tient

s’aw

aren

ess

ofch

ange

sin

thei

rab

ility

;pra

ctic

eof

self-

perf

orm

edpr

edic

tion

and

goal

-set

ting

durin

gex

perie

ntia

lfu

nctio

nale

xerc

ise;

conc

rete

and

exte

nsiv

efe

edba

ck.I

ndiv

idua

l.

Not

spec

ified

4w

k,5

da

wee

k,2

sess

ions

per

day.

C:C

onve

ntio

nalr

ehab

ilita

tion

prog

ram

:in

clud

edph

ysic

al,f

unct

iona

l,an

dco

gniti

veas

pect

sof

occu

patio

nal

ther

apy.

Ingr

oups

,par

ticip

ants

wer

etr

aine

din

activ

ities

ofda

ilyliv

ing,

trai

ning

inm

otor

func

tion

prer

equi

site

sfo

rfu

nctio

nalt

asks

,co

gniti

vetr

aini

ng(u

nstr

uctu

red

orie

ntat

ion

and

mem

ory

grou

p),a

nda

pred

isch

arge

arra

ngem

ent

grou

p.(c

ontin

ues)



AB

LE3

Inte

rven

tion

char

acte

rist

ics

(Con

tinue

d)

Au

tho

r/s

Aim

of

inte

rve

nti

on

Inte

rve

nti

on

(E/C

)D

iscip

lin

es

inv

olv

ed

Du

rati

on

/In

ten

sit

y

Gov

erov

eret

al38

Alle

viat

edi

fficu

lties

rela

ted

tose

lf-aw

aren

ess

and

self-

regu

latio

nan

dto

addr

ess

func

tiona

lpe

rfor

man

ceou

tcom

es

Per

form

ance

ofon

ein

stru

men

tal

activ

ityof

daily

livin

g.E

:Prio

rto

task

,pa

rtic

ipan

tde

fined

task

goal

s;pr

edic

ted

perf

orm

ance

;ant

icip

ated

and

prep

lann

edfo

rer

rors

orob

stac

les;

chos

ea

stra

tegy

toav

oid

erro

rs;a

sses

sed

amou

ntof

assi

stan

cene

eded

.Aft

erta

skco

mpl

etio

n,pa

rtic

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tes

timat

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dev

alua

ted

own

perf

orm

ance

,fol

low

edby

adi

scus

sion

with

the

rese

arch

er.

Aft

erw

ards

the

part

icip

ant

wro

teex

perie

nces

ina

jour

nal

Occ

upat

iona

lth

erap

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indi

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alse

ssio

ns(4

5m

in)o

ver

3w

k

C:c

onve

ntio

nalp

ract

ice,

incl

udin

gdi

rect

corr

ectiv

efe

edba

ckfr

omth

erap

ist.

Ow

nsw

orth

etal

39To

targ

eter

ror

awar

enes

san

dse

lf-co

rrec

tion

in2

real

-life

sett

ings

:(1

)coo

king

atho

me

and

(2)

volu

ntee

rw

ork

Prio

rto

base

line

asse

ssm

ent

subj

ect

prac

tices

cook

ing

am

ealw

ithhi

sm

othe

r’s

supp

ort.

Trea

tmen

t:Fe

edba

ckab

out

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subj

ect’

spo

stin

jury

chan

ges.

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catio

nfo

rfa

mily

,fee

dbac

ken

prom

ptin

gdu

ring

the

spec

ific

perf

orm

ance

son

cook

ing

and

wor

kta

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Pro

mpt

ing

acco

rdin

gto

the

prin

cipl

esof

“Pau

se,P

rom

ptan

dP

rais

e.”62

Rol

ere

vers

alte

chni

que

(obs

ervi

ngm

othe

rco

oken

give

her

feed

back

).E

xter

nalr

emin

der

(ele

ctro

nic

timer

)for

chec

king

reci

pe,

prec

ooki

ngdi

scus

sion

,and

post

cook

ing

feed

back

disc

ussi

on.

Vid

eofe

edba

ck.S

imila

rte

chni

ques

wer

eus

edin

the

volu

ntee

rta

sk.

Occ

upat

iona

lth

erap

ist

Coo

king

:16

wk:

4w

kba

selin

e,8

wk

trea

tmen

t,an

d4

wk

mai

nten

ance

and

gene

raliz

atio

nW

ork:

16w

k:12

wk

base

line,

4w

ktr

eatm

ent.

Reb

man

nan

dH

anno

n40To

test

anin

terv

entio

nfo

rre

duci

ngun

awar

enes

sof

mem

ory

defic

itsus

ing

abe

havi

oral

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oach

Bas

elin

eco

nditi

on:n

ofe

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ckdu

ring

perf

orm

ance

trea

tmen

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uala

ndve

rbal

feed

back

:pro

blem

solv

ing

appr

oach

,enc

oura

ging

subj

ects

tofin

dou

tw

hyth

eir

pred

ictio

nsdi

dno

tm

atch

thei

rpe

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man

cean

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)po

sitiv

ere

info

rcem

ent:

verb

alpr

aise

and

lott

ery

ticke

ts.

Not

spec

ified

No.

1:8

trea

tmen

tse

ssio

nsN

o.2:

6tr

eatm

ent

sess

ions

No.

3:6

trea

tmen

tse

ssio

nsD

urat

ion

and

inte

nsity

:2se

ssio

nsa

wee

kfo

r5-

6w

k.( c

ontin

ues)




TA

BLE

3In

terv

entio

nch

arac

teri

stic

s(C

ontin

ued)

Au

tho

r/s

Aim

of

inte

rve

nti

on

Inte

rve

nti

on

(E/C

)D

iscip

lin

es

inv

olv

ed

Du

rati

on

/in

ten

sit

y

Tham

etal

41Im

prov

ing

awar

enes

sof

disa

bilit

ies

incl

ient

with

unila

tera

lneg

lect

Aph

ase:

occu

patio

nalt

hera

py;5

days

aw

eek

focu

sed

ontr

aini

ngin

self-

care

activ

ities

byus

ing

the

part

icip

ants

avai

labl

eab

ilitie

san

dby

adap

ting

task

sde

man

dsan

dco

ntex

ts.

Pat

ient

spa

rtic

ipat

edin

othe

rre

habi

litat

ion

serv

ices

asw

ell.

Bph

ase:

Focu

sof

occu

patio

nalt

hera

pyon

trai

ning

awar

enes

sof

abili

ties.

Ther

apis

tssu

ppor

tth

epa

tient

sto

choo

sem

otiv

atin

gtr

aini

ngta

sks;

disc

uss

and

eval

uate

perf

orm

ance

(incl

udin

gle

arni

ngco

mpe

nsat

ory

tech

niqu

es);

use

the

hom

een

viro

nmen

t(e

g,co

nfro

ntat

ion)

;vi

deo

feed

back

;usi

ngth

erap

eutic

narr

ativ

es

Occ

upat

iona

lth

erap

yA

BA

:A1

phas

e:ba

selin

eob

serv

atio

nsdu

ring

4se

ssio

nsov

er2-

wk

perio

d.1-

2h

ada

y.In

terv

entio

nph

ase

B:

4da

taco

llect

ion

sess

ions

over

4w

k,1

hto

2h

ada

y,5

days

aw

eek.

A2

FUph

ase:

2tim

esda

taco

llect

ion

afte

r5

and

9w

k

Togl

iaet

al44

Toim

prov

epr

oxim

alou

tcom

es(c

ogni

tive

stra

tegi

esan

dse

lf-re

gula

tion)

,di

stal

outc

omes

(gen

eral

awar

enes

san

dev

eryd

ayfu

nctio

n),

and

mai

nten

ance

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ins

4w

kFU

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ded

antic

ipat

ion

ofch

alle

nges

,gu

ided

stra

tegy

gene

ratio

n,er

ror

disc

over

yph

ase,

stra

tegy

trai

ning

/med

iatio

nph

ase,

rein

forc

emen

tof

stra

tegy

use,

sess

ion

self-

eval

uatio

n,st

ruct

ured

jour

nal

Occ

upat

iona

lth

erap

y75

-min

sess

ions

,tw

ice

per

wee

kov

er∼5

wk

Togl

iaet

al42

Toim

prov

ele

arni

ngan

dtr

ansf

erof

stra

tegy

use,

self-

mon

itorin

gsk

ills,

perf

orm

ance

infu

nctio

nalt

asks

post

inte

rven

tion,

and

awar

enes

s

See

Togl

iaet

al44

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upat

iona

lth

erap

y75

-min

sess

ions

,tw

ice

per

wee

kov

er∼5

wks ( con

tinue

s)



TA

BLE

3In

terv

entio

nch

arac

teri

stic

s(C

ontin

ued)

Au

tho

r/s

Aim

of

inte

rve

nti

on

Inte

rve

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on

(E/C

)D

iscip

lin

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inv

olv

ed

Du

rati

on

/In

ten

sit

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Zhou

etal

43A

gam

efo

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tote

ach

info

rmat

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abou

tA

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ope

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sex

perie

ncin

gth

eef

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sof

such

inju

ries.

Six

cate

gorie

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ere

targ

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:beh

avio

r,em

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atio

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ysic

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ach

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conc

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fect

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sidu

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pers

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and

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tegi

es.Q

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writ

ten

onon

esi

deof

the

card

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swer

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ona

mod

ified

Triv

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=18

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tions

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rcen

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ior

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atio

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.Whe

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etar

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ard

for

part

icip

atio

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ng.

Psy

chol

ogy;

adva

nced

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ents

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aste

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degr

eein

beha

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anal

ysis

and

ther

apy.

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3tim

esa

wee

k.D

urat

ion

31se

ssio

ns(5

base

line

sess

ions

,26

trea

tmen

tse

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2FU

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ions

).FU

sess

ions

2-4

wk

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revi

atio

ns:C

,con

trol

grou

p;E

,exp

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meaningful daily tasks at both the rehabilitation cen-ter and the home environment. Strategy behaviors wereencouraged, followed by self-evaluation and visual andverbal feedback. Awareness of abilities improved in these4 patients (clinically meaningful change). The PND of100% indicates that the treatment was highly effective.The improvements were maintained at follow-up in 2 of3 patients.

Cheng and Man25 conducted an RCT with 22 pa-tients with moderate ABI in the postacute phase withintellectual awareness at baseline. The experimentalgroup received a 4-week Awareness Intervention Pro-gram that included enhancing objective knowledgeabout deficits, experiential functional exercises, prac-tice of self-performed prediction and goal setting, andconcrete and extensive feedback. The control group fol-lowed a conventional rehabilitation group program in-cluding training in activities of daily living, training inmotor function, and cognitive training. The result wasan improvement in the level of awareness and in func-tional activities of daily living and IADL activities for theexperimental group, but not the control group (Hedge’sg = 0.5-1.7).

The behavioral approach of Rebmann and Hannon40

was based on positive verbal (praise) and materialistic(lottery tickets) reinforcement for more accurate predic-tions of performance. Task-specific awareness improvedin all 3 participants; however, the effect of the treatmentwas questionable as indicated by a PND of 56%.

Zhou43 investigated a modified Trivial Pursuit gameformat intervention over a period of 11 weeks using pos-itive feedback in 3 aggressive men with severe TBI whohad poor awareness of deficits in the chronic phase re-covery. Participants engaged in 1-hour group sessions3 times a week (32 sessions). The topics included “be-havior and emotion,” “cognition and communication,”and “physical and sensory.” For each topic, the ques-tions concerned terminology, the effects that limitationsmight have on a person’s life, and potential compen-satory strategies. Feedback was positive when answerswere correct and informative (ie, corrective) when an-swers were incorrect. All 3 patients showed improve-ment in general knowledge of the consequences of ABI(PND 80%–81%). However, a general understanding ofthe impact of ABI may not reflect patients’ awarenessof their own deficits. There was no change observed inthe discrepancy between ratings given by patients andclinicians on a competency rating scale, indicating thatpatients’ knowledge of their own deficits did not im-prove (PND 50%).

The remaining 4 studies in the high-quality group didnot show improvement in awareness of deficits. How-ever, the 2 studies of Toglia et al42,44 are worth describ-ing briefly because of the theoretical background of theintervention.

Toglia et al42,44 outlined the importance of gener-alizing strategy use from trained to untrained tasks.Therefore, they used a multicontext approach that in-cluded systematically varying treatment activities andcontext and gradually increasing transfer distance. In9 sessions, improvements were observed in monitoringskills and strategy use (PND 100%), and these improve-ments persisted in 3 of 4 patients at follow-up in onestudy,44 but not in the other.42 General awareness ofdeficits, however, remained unchanged. Toglia et al44

and Ownsworth et al64 suggested that persons who lackunderstanding of their general deficits still are able tolearn to use and monitor a strategy across situations. Theunderlying mechanisms may include automatic learn-ing and habit formation and active and deliberate self-monitoring mechanisms.


The types of interventions in the moderate-qualitystudies are similar to those of the high-quality stud-ies. They were diverse as well and consisted ofmultiple components, such as the therapeutic re-lationship (N = 3),55,57,58 education and feedback(N = 9),6,46,47,51,54,56–58,60 coping and problem-solving(N = 2),47,53 and social skills training (N = 1).50

The interventions of the moderate-quality studies weremostly carried out by a multidisciplinary team (N =5).6,47,48,52,60 Other disciplines involved were psychol-ogy (N = 3),46,50,53 occupational therapy (N = 3),57–59

and neurology (N = 1).51 In 4 studies, the type of ther-apy was not clearly specified.49,54–56 The intensity of theinterventions varied between studies from 1 session to56 sessions, with an average duration of 14 weeks andan average of 4 days a week therapy. Three interven-tions used group therapy.6,47,50 The other interventionsconsisted of individual training.

Quality assessment

Although the CONSORT Statement is primarily in-tended to address RCTs, an effort was made by theauthors to review non-RCT studies of higher quality aswell as the validity and applicability of their results.

The quality of the 9 high-quality studies is presentedin Table 4. In general, the quality of the report wasmoderate. No study scored more than 50% on thechecklist. Positive aspects were accurate reporting inthe abstract, introduction, and discussion. The methodsections, however, were of lower quality. The descrip-tion of intervention methods was mostly in globalterms, without specific discussion of the similaritiesand differences between interventions. Furthermore,descriptions of the procedure for tailoring interventionsto individual participants and details of how therapist



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adherence to the protocol was assessed or enhancedwere often not indicated.

DISCUSSION

This systematic literature search of the available treat-ment methods for unawareness of deficits in people withbrain injury yielded 25 studies for inclusion. Nine stud-ies with controlled or single case experimental designswere considered to be high quality and were investi-gated thoroughly. Interventions were performed mostlyin people with traumatic brain damage who were inthe chronic phase and had moderate to severe levels ofinjury.

Conceptual and methodological differences made itdifficult to compare studies. As noted in previous re-views, researchers used different interventions to addressimpaired self-awareness.27 The majority of the treat-ments included a combination of psychoeducation andfeedback.

Three interventions (2 RCTs and 1 SCED) showedpromising results with multimodal training andfeedback.25,38,41 These studies utilized patients in thepostacute phase of rehabilitation with intellectual aware-ness at baseline. It remains unclear which aspects of thetreatment were effective, but the interventions in thesestudies shared some elements that might have led toimprovements in awareness. These were training func-tional skills in real life settings, guided experience, mul-timodal feedback, and dialogue between therapist andpatient, which could best be described as Socratic rea-soning. The last of these comports with the view thatmotivational interviewing might be a useful techniqueto improve awareness of deficits.65

Furthermore, 2 studies40,42 investigated awareness in-terventions in an artificial training situation. In patientswith ABI exhibiting severe lack of awareness, a single taskor game was practiced, and performance was rewardedon the basis of the principles of operant conditioning.These interventions led to task-specific improvementsin awareness.

The studies that did show a positive effect of interven-tion on awareness included patients with at least someintellectual awareness. To date, there is no convincingevidence that people with unawareness in the chronicphase post-ABI may progress to some level of intellec-tual awareness. It remains unclear whether awareness ofdeficits can be improved in patients with very poor intel-lectual awareness who are in the chronic phase after in-jury when spontaneous recovery is unlikely. Moreover, aprerequisite for intellectual awareness is the basic cogni-tive ability of patients to remember and integrate past ex-periences to draw conclusions about the commonalitiesbetween their pre- and postinjury experiences. Thus, sig-nificant deficits in abstract reasoning or memory during




the chronic phase of recovery might underlie enduringlimitations in intellectual awareness.15

There are still many questions to be answered. Toformulate general guidelines for the developmentof an awareness intervention, several points needfurther attention. First, many studies lack a theoreticalperspective. Although some studies acknowledgeand hypothesize 2 or 3 components underlying theconcept of awareness, they do not specifically report atwhich component of awareness their intervention andoutcome measures are aimed. Defining these factors isnecessary to frame the results in a theoretical perspectiveto verify and refine the existing theories. Second, thereare several good quality measurement instruments toassess awareness.66 However, these measurements donot encompass all 3 components of awareness. This isimportant to consider when evaluating the impact ofawareness interventions. Third, the concepts “learning”and “changing awareness” seem to be used inter-changeably. It remains unclear whether a task-specificimprovement is the result of increased awareness orsimply learning a task. Only when an improvement canbe generalized to other nontrained tasks or daily func-tioning, one can speak of an improvement in awareness.

Before reaching a consensus on how to treat unaware-ness of deficits, we should agree on an underlying theoryand standardize measures of awareness to promote ac-curate determination of treatment effects. The next stepis to take into account patients’ basic and higher-ordercognitive deficits that may affect awareness and, thus,determine the patients’ current ability to be aware oftheir problems.15 Another conceptual issue to addressis the fact that the reviewed studies did not distinguishbetween impaired self-awareness and denial of disabil-ity, that is, the psychological component of awareness.These concepts are not mutually exclusive, but likelyrequire different treatment approaches.58,67

In general, the quality of the study reports was mod-erate. Often, the description of the intervention was notclearly stated or was explained only in general terms. Itwas never reported how therapist adherence to the treat-ment protocol was assessed or enhanced. In addition, itwas not always clear what the important outcome mea-sures were and how they were used in the analysis. Theseresults are in line with those of a previously publishedsystematic review concerning the content of evidence-based cognitive rehabilitation, which emphasized thelack of information provided in studies about the actualcontent of treatment.68

This review differs from previous reviews in that itused less stringent restrictions on included studies ofmethods to improve awareness of deficits, resulting in abroad spectrum of research. However, this approach hasits limitations. The heterogeneity of the studied samplesin terms of injury severity, brain injury etiology, time

since injury, and the small sample sizes of several stud-ies limit the generalizability of the results and the prac-tical applicability of the conclusions. Also, we utilizedauthors’ conclusions in interpreting the effects of stud-ies that lack statistical test results, and these conclusionsmay be too optimistic or even erroneous. However, forsome studies, the calculated PNDs, despite its limita-tions, provided a better basis for interpretation of theresults.

Unawareness of deficits in patients with ABI is a well-known clinical problem that hinders the rehabilitationprocess. To tackle this problem, a practical and evidence-based protocol to improve awareness is necessary; how-ever, such a protocol is not yet available. We adviseclinicians to consider the improvement of awareness asa primary treatment goal and not as merely a byproductof rehabilitation. In other words, if a patient undergoescognitive rehabilitation but is unaware of his or her cog-nitive deficits, one main objective of cognitive rehabil-itation should be to increase awareness of the patient’sproblems. Furthermore, future studies should considerthe use of the CONSORT Statement36,37 to improvemethodological quality reporting.

On the basis of this review, we can propose sometentative guidelines regarding treatment of patients withimpaired self-awareness. A general approach to improveawareness includes training functional skills in multi-ple, preferably real life, settings with feedback usingguided experience in a Socratic dialogue. Furthermore,to choose which intervention is most appropriate for aspecific patient, it is helpful to determine a cognitiveprofile of strengths and weaknesses, because cognitionis an important component of awareness of deficits.13

It is also worthwhile to determine on which learninglevel the intervention should focus. For example, if theintervention is aimed at improving a specific task, thetraining could be based on procedural and explicit learn-ing. If the goal is improving ability, the intervention ismore complex. In this case, generalization across tasksis necessary, and it requires the meta-cognitive abilityto reflect upon oneself, which is an important aspect ofawareness.

Although we realize that the aforementioned consid-erations will be challenging in both research and clinicalsettings, they represent a necessary step to move forwardto increase understanding and improve the efficacy ofinterventions aimed at awareness of deficits.

CONCLUSION

Our systematic review showed that impaired aware-ness after ABI could be improved in patients withsome degree of intellectual awareness through a com-bination of education and multimodal feedback re-lated to performance. However, there still is a need



for high-quality intervention studies with controlled de-signs (ie, SCED, RCT) based on a theoretic perspec-tive with a detailed description of the content of theintervention and suitable outcome measures. Future re-search should focus on identifying the components thatcontribute to improved awareness in people with ABI,

preferably using a sound methodology and theoreticalperspective. Instead of considering improved awarenessas the residual byproduct of rehabilitation, cliniciansshould specifically focus on awareness and test their ef-forts to improve awareness with single-case experimentaldesigns.

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