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This article was downloaded by:[King's College London]On: 17 June 2008Access Details: [subscription number 773576048]Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
American Journal of PsychiatricRehabilitationPublication details, including instructions for authors and subscription information:http://www.informaworld.com/smpp/title~content=t714578513
What Do Clients Think of Cognitive RemediationTherapy?: A Consumer-Led Investigation of Satisfactionand Side EffectsDIANA ROSE a; TIL WYKES a; DESMOND FARRIER b; ANN-MARIE DORAN b;TIM SPORLE c; DIANA BOGNER da Institute of Psychiatry, Kings College, Londonb Service User, South London and Maudsley NHS Foundation Trust,c Barnet, Enfield and Haringey Mental Health NHS Trust,d University of Hertfordshire,
Online Publication Date: 01 April 2008
To cite this Article: ROSE, DIANA, WYKES, TIL, FARRIER, DESMOND, DORAN, ANN-MARIE, SPORLE, TIM andBOGNER, DIANA (2008) 'What Do Clients Think of Cognitive Remediation Therapy?: A Consumer-Led Investigation ofSatisfaction and Side Effects', American Journal of Psychiatric Rehabilitation, 11:2, 181 — 204
To link to this article: DOI: 10.1080/15487760801963694URL: http://dx.doi.org/10.1080/15487760801963694
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What Do Clients Think of CognitiveRemediation Therapy?: A Consumer-Led Investigation of Satisfaction andSide Effects
Diana Rose and Til Wykes
Institute of Psychiatry, Kings College, London
Desmond Farrier and Ann-Marie Doran
Service User, South London and Maudsley NHSFoundation Trust
Tim Sporle
Barnet, Enfield and Haringey Mental Health NHS Trust
Diana Bogner
University of Hertfordshire
Consumers’ views of treatments are not routinely measured but they arecrucial to the implementation of Cognitive Remediation Therapy (CRT).However, the measurement of consumer opinion is fraught with difficultiesbecause of the halo effect produced when there is a lack of perceived indepen-dence of satisfaction assessment and treatment support. This study aimed toovercome this problem by using a participatory research model that includedconsumers as researchers. A questionnaire was constructed by consumers andthen used in interviews conducted by consumers with people who hadexperienced CRT (N ¼ 21). These data were then compared with data froma randomized, controlled trial (N ¼ 85). The results indicated that clients were
Address correspondence to Diana Rose, Service User Research Enterprise (SURE), Instituteof Psychiatry, King’s College London, PO Box 34, De Crespigny Park, Denmark Hill, LondonSE5 8AF, UK. E-mail: [email protected]
181
American Journal of Psychiatric Rehabilitation, 11: 181–204
Taylor & Francis Group, LLC # 2008
ISSN: 1548-7768 print=1548-7776 online
DOI: 10.1080/15487760801963694
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satisfied with CRT, but also showed that CRT has unintended side effects thatclinicians and researchers need to address. In particular, if there are noperceived effects of CRT during therapy, then this has a detrimental effecton self-esteem. The study showed that there are research and clinical benefitsin finding out from consumers their views on treatments, but in addition itdemonstrated that participatory research methods can be used even with agroup of consumers who are considerably psychiatrically disabled.
There has recently been a rapid growth in psychological treatmentsfor people with schizophrenia and they are now recommended tobe options in the total care package (NICE, 2003; Lehman et al.,2004). These recommendations were made on the basis of theresults of randomized, controlled trials that concentrated onimprovements in symptoms or functioning. However, even whenan intervention has been found to be efficacious, disseminatingthese therapies into routine practice is often extremely difficult.The barriers include obvious pragmatic difficulties, such as theavailability of trained professionals or training programs, as wellas whether staff finds the therapies appealing. However, even if atherapy is appealing and even if it is efficacious, a therapy willnever be useful if consumers have a poor view of its worth. Indeed,satisfaction can be argued to be central to effectiveness in that con-sumers’ levels of satisfaction are a good predictor of the treatment’seffects. These more subtle indications of acceptability and efficacyare often missed in large scale studies. This is particularlyimportant for psychological therapies because they usually requirea higher level of commitment by the recipient than medicationtherapies. Certainly noone has yet found a way to insist on compul-sory psychological treatment.
The primary aim of this article is to investigate consumersatisfaction with one psychological therapy—CRT. Although theoutcomes of CRT are encouraging (NICE, 2003; Lehman et al., 2004;Wykes, Reeder, Corner, Williams, & Everitt, 1999; Wykes, Reeder,Williams, Corner, Rice, & Everitt, 2003; Bell, Bryson, Fiszdon, Greig,& Wexler, 2004; Spaulding, Reed, Sullivan, Richardson, & Weiler,1999), the effects on cognitive improvements are modest. Little isknown about the views of consumers on the acceptability of therapyapart from anecdotal reports and inferences drawn from the dropout rates in the therapy trials. Information on acceptability isimportant both for increasing the effectiveness of CRT and to detectpossible unwanted side effects which may interfere with its efficacy.
182 D. Rose et al.
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A second aim of the study is to see if the results from the firstpart are confirmed in a larger dataset coming from a randomized,controlled trial.
CRT
The cognitive remediation therapy under investigation is a40-session manual driven individual therapy using paper andpencil tasks (see Delahunty, Reeder, Wykes, Morice, & Newton,2002; Wykes et al., 2003; Wykes & Reeder, 2005 for a detaileddescription). The therapy is divided into three areas of cognitiveskill: Cognitive Flexibility, Memory, and Planning. The therapy isprovided on at least three days per week and a wide variety ofassessments are carried out both before and after therapy toestimate any cognitive gains.
WHAT DO WE KNOW ABOUT CONSUMERSATISFACTION WITH COGNITIVE THERAPIES?
In order to identify satisfaction with CRT we need to know somespecific information about satisfaction with this therapy. But wealso need to know what satisfaction data are available about similarcognitive therapies as these data may help us to design appropriatesatisfaction studies for CRT. We therefore carried out a literaturesearch of Medline (‘‘patient satisfaction’’ and ‘‘cognitive therapy’’)and PsychInfo (‘‘client satisfaction’’ and ‘‘cognitive therapy’’). Thedates searched were 2000–2006. Inclusion criteria were that thearticle should be about cognitive therapy and not other forms ofpsychotherapy (e.g., psychodynamic therapy), except where a trialconsisted of a comparison of more than one type of therapy. Thisexclusion criterion was chosen because we wanted to identifytherapies as close to CRT as possible and cognitive behaviortherapy (CBT) was the nearest comparator. The remainingexclusion criteria were: physical illness, substance abuse, and olderpeople as these were the exclusion criteria used in CRT studies.
The initial searches yielded 138 citations but with the exclusionsthis was reduced to 44. The papers were then hand searched and atthis stage it was revealed that 21 did not, in fact, deal with patientsatisfaction. This left 23 papers for consideration. The studies weretabulated according to the design of the research, the intervention,
Client Satisfaction With and Side Effects of CRT 183
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diagnostic group, the results in terms of satisfaction, the importanceof satisfaction in the paper (assessed by the amount of spacedevoted to it), and whether or not the authors correlated satis-faction with outcome and any consumer involvement. The resultsare shown in Table 1.
As can be seen from Table 1, the studies used a variety ofmethods. The interventions were always CBT, sometimescompared with counselling. However, no study used CRT as theintervention and this would have been possible given the inclusioncriteria. Diagnosis was overwhelmingly depression or mixeddepression and anxiety with only one paper considering apsychotic disorder, in this case bipolar disorder. Additionally, allbut one of the papers concerning adults took place in a primarycare setting. The studies on children took place in school settings.Thus, the studies reviewed here are concerned mostly with com-mon mental disorders and did not take place in specialised mentalhealth services. These populations and settings are therefore unlikethose in CRT studies.
The attention paid to the issue of satisfaction in these papers wasgenerally minor. Only the paper by Richards and colleagues(Richards, Barkham, Cahill, Richards, Williams, & Heywood,2003) can be judged as having substantial attention to satisfactionin the methods, results, and discussion. Finally, only one paper(Gabby, Shiels, Bower, Sibbald, King, & Ward, 2003) attemptedto correlate satisfaction with outcome and the correlation was weak.So despite references to consumer satisfaction, these articlesgenerally treat the subject so slightly that we can only conclude thatvery little is known about consumer satisfaction with cognitivetreatments. All the research was carried out by clinical academicsusing instruments designed by clinical academics. No studyinvolved consumers in the design of instruments and no study sofar has been concerned with schizophrenia.
When the search term, ‘‘cognitive remediation therapy,’’ wasadded to the search strategy, no citation was retrieved at all. Wetherefore carried out more detailed hand searching of two recentsystematic reviews. The search of Krabbendam and Aleman(2003) revealed 39 papers. None of these referred to consumersatisfaction. Two referred to self-esteem, one anecdotally (Medalia,Aluma, Tryon, & Merriam, 1998) and one using a validated mea-sure (Wykes et al., 1999). With duplicates removed, we identifiedseven further papers from Twamley, Jeste, and Ballack (2003).
184 D. Rose et al.
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TA
BL
E1.
Ch
arac
teri
stic
so
fst
ud
ies
exam
inin
gco
nsu
mer
sati
sfac
tio
nw
ith
cog
nit
ive
ther
apy
Au
tho
rsan
dD
ate
(Alp
hab
etic
alO
rder
)D
esig
nIn
terv
enti
on
Dia
gn
osi
sR
esu
lts
Sp
ace
Dev
ote
d
(or
Pro
xy
)
Co
rrel
atio
n
Bet
wee
n
Sat
isfa
ctio
n
and
Ou
tco
me
Co
nsu
mer
Inv
ov
lem
ent
Asa
rno
w,
Sco
tt,
&M
intz
,20
02
RC
TF
amil
y=
CB
TD
epre
ssed
chil
dre
n
Hig
hac
cep
tab
ilit
yM
od
erat
eN
ot
mea
sure
d
–d
iscu
rsiv
e
No
Bar
rett
,S
on
der
egg
er,
&S
on
der
egg
er,
2001
Ev
alu
atio
nG
rou
pth
erap
yD
epre
ssed
chil
dre
n
Hig
hac
cep
tab
ilit
yM
od
erat
eN
ot
mea
sure
d
–d
iscu
rsiv
e
No
Bo
ilso
n,
Mu
rdo
ch,
Hu
ll,
Ham
ilto
n,
&S
cott
,20
04
Pil
ot
RC
TC
BT=ad
her
ence
ther
apy
Bip
loar
Hig
hac
cep
tab
ilit
y
for
bo
thg
rou
ps
Min
or
No
No
Bo
uh
las
&B
on
d,
2000
Th
eore
tica
l
mo
del=b
asic
eval
uat
ion
Gro
up
cog
nit
ive
ther
apy
All
–y
ou
ng
peo
ple
Hig
hsa
tisf
acti
on
Min
or
No
No
Cla
rke,
Ree
s,&
Har
dy
,20
04
Ev
alu
atio
nC
BT
Dep
ress
ion
No
tsp
ecif
ied
Pro
xy
No
No
Fis
her
&S
vin
-Bad
en,
2001
Ev
alu
atio
nO
T–
mix
edC
BT
and
fam
ily
etc
Ear
lyp
sych
osi
s
(n¼
5)
Mix
edM
ajo
rN
o?
Par
tner
ship
inth
erap
y
Gab
bay
,S
hie
ls,
Bo
wer
,
Sib
bal
d,
Kin
g,
&
War
d,
2003
Pat
ien
t
pre
fere
nce
RC
T
CB
Tv
s
No
n-d
irec
tiv
e
cou
nse
llin
g
Dep
ress
ion=
An
xie
ty
Wea
kas
soci
atio
n
wit
hsa
tisf
acti
on
Mo
der
ate
Yes
No
Hig
het
&D
rum
mo
nd
,
2004
Ev
alu
atio
nC
om
bin
atio
ns
of
CB
and
ph
arm
aco
log
y
Po
stP
artu
m
Dep
ress
ion
Inte
rven
tio
n
gro
up
mo
re
sati
sfie
d
Min
or
No
No
Kin
get
al.
2000
Pat
ien
t
pre
fere
nce
RC
T
GP
TA
U,
CB
T,
no
n-d
irec
tiv
e
cou
nse
llin
g
Dep
ress
ion
Co
un
sell
ing
gro
up
mo
re
sati
sfie
d
Min
or
No
No
(Con
tin
ued
)
185
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TA
BL
E1.
Co
nti
nu
ed
Au
tho
rsan
dD
ate
(Alp
hab
etic
alO
rder
)D
esig
nIn
terv
enti
on
Dia
gn
osi
sR
esu
lts
Sp
ace
Dev
ote
d
(or
Pro
xy
)
Co
rrel
atio
n
Bet
wee
n
Sat
isfa
ctio
n
and
Ou
tco
me
Co
nsu
mer
Inv
ov
lem
ent
Pro
ud
foo
tet
al.
2004
RC
TC
om
pu
ter
assi
sted
CB
T
An
xie
tyan
d
dep
ress
ion
Inte
rven
tio
n
gro
up
hig
her
Ver
yM
ino
rN
oN
o
Ric
har
ds
etal
.
2003
RC
TC
BT
:
Nu
rse-
faci
lita
ted
self
-hel
p
An
xie
tyan
d
dep
ress
ion
Co
mp
lex
Maj
or
No
No
Ris
dal
eet
al.
2001
RC
TC
BT
or
Co
un
sell
ing
Ch
ron
icfa
tig
ue
No
tre
po
rted
Ver
ym
ino
rN
oN
o
Ru
shet
al.
2004
Co
mp
lex
tria
lP
har
mac
oth
erap
y
and
CB
T
Maj
or
Dep
ress
ion
Th
eore
tica
l
pap
er
Min
or
No
No
Sim
pso
n,
Co
rney
,
Fit
zger
ald
,&
Bee
cham
,20
00
Pat
ien
t
pre
fere
nce
RC
Tþ
qu
alit
ativ
e
CB
TD
epre
ssio
nIn
terv
enti
on
gro
up
mo
re
sati
sfie
d
Min
or
No
No
Sim
pso
n,
Kn
ox
,
Mit
chel
l,F
erg
uso
n,
Bre
bn
er,
&B
reb
ner
,
2003
Ran
do
mfr
om
po
stco
des
Vid
eo trea
tmen
t–
CB
T
Eat
ing
dis
ord
ers
Pre
fere
nce
ov
er
face
-to
-fac
e
Mo
der
ate
No
tm
easu
red
–d
iscu
rsiv
e
No
Sv
enss
on
,L
arss
on
,
&O
st,
2002
Ev
alu
atio
nB
rief
Ex
po
sure
Th
erap
y
Sp
ecif
ic
ph
ob
ias
–
yo
un
gp
eop
le
Hig
hsa
tisf
acti
on
Maj
or
Yes
No
Sh
ort
t,B
arre
tt,
&
Fo
x,
2001
RC
TM
od
ifie
dC
BT
An
xie
ty–
chil
dre
nH
igh
sati
sfac
tio
nM
ino
rb
ut
mo
der
ate
for
pro
xy
No
No
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Sta
llar
d,
Sim
pso
n,
An
der
son
,C
arte
r,
Osb
orn
,&
Bu
sh,
2005
Op
en eval
uat
ion
Gro
up
cog
nit
ive
trea
tmen
t
An
xie
ty–
chil
dre
nH
igh ac
cep
tab
ilit
y
Mo
der
ate
No
No
Th
ien
man
n,
Mar
tin
,C
reg
ger
,
Th
om
pso
n,
&
Dy
er-F
ried
man
,
2001
Pil
ot
Gro
up
CB
TO
CD
–ch
ild
ren
Mo
der
ate
sati
sfac
tio
n
Min
or
No
No
War
d,
Kin
g,
Llo
yd
,
etal
.20
00
Pat
ien
t
pre
fere
nce
RC
T
GP
TA
U,
no
n-d
irec
tiv
e
cou
nse
llin
g
and
CB
T
Dep
ress
ion
No
n-d
irec
tiv
e
cou
nse
llin
g
pre
ferr
ed
Min
or
No
No
Wri
gh
tet
al.
2002
Ev
alu
atio
nC
om
pu
ter-
assi
sted
CB
T
All
no
n-p
sych
oti
c
Hig
h acce
pta
bil
ity
Mo
der
ate
No
No
Wh
itta
l&
O’N
eil,
2003
Cas
est
ud
yC
BT
OC
DN
ot
rep
ort
edZ
ero
No
No
Zlo
tnic
k,
Naj
avit
s,
Ro
hse
no
w,
&
Joh
nso
n,
2003
Cas
eco
ntr
ol
CB
TS
UD
&P
TS
DH
igh sa
tisf
acti
on
Mo
der
ate
No
No
Ex
per
tA
dd
itio
ns
Mil
eset
al.,
2007
Ev
alu
atio
nC
RT
Psy
cho
sis
Hig
h sati
sfac
tio
n
Maj
or
No
No
Cu
pit
tet
al.,
2004
Ev
alu
atio
nC
RT
Psy
cho
sis
Mix
edM
od
erat
eP
arti
alN
o
Rev
hei
met
al.,
2001
Ev
alu
atio
nC
RT
Psy
cho
sis
Hig
hM
ajo
rN
oN
o
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There was no reference to consumer satisfaction or associatedconcepts in six of these papers, and, although Ahmed and Goldman(1994) recommend that services be more consumer-focused, thiswas not part of their empirical work. We can only conclude thatthese 46 papers make no reference to consumer satisfaction with,or assessment of, CRT.
In order to ensure that we had not missed more recent papers orpapers not in peer-reviewed journals, we contacted colleagues whoare experts in cognitive therapy for psychosis in the UK and USA.We were advised of one paper in press that concerned clientsatisfaction with CBT for psychosis (now published: Miles, Peters,& Kuipers, 2007). The whole of this paper is devoted to consumersatisfaction. Satisfaction was high for all components of the scale,but particularly with therapist characteristics. The paper used avalidated scale but again one that was clinician-driven. Therewas no attempt to correlate level of satisfaction with therapy withclinical outcome.
A further paper identified, Cupitt, Byrne, and Tompson (2004),described a short analysis of client and therapist satisfaction withCRT. They were able to contact and get consent from five parti-cipants; the results are presented as case studies and satisfactionlevels were mixed. The authors point out that the training of theirtherapists and the contexts in which they had to work were far fromideal and this may have affected their results. On the other hand,this study did recruit from participants who received CRT in aclinical setting as opposed to the controlled environments in RCTs.
The US contacts produced one reference by Revheim, Kamnitzer,Casey, & Medalia, (2001), who describe an exploratory studywhere cognitive remediation supplements an ongoing psychiatricrehabilitation program. Consumer acceptability and satisfaction isa strong theme in this paper and the results showed a high degreeof satisfaction. However, out of more than 80 potential respondents,only ten completed the satisfaction assessment.
These exhaustive searches show that very little is knownabout consumer satisfaction with cognitive therapy in general andcognitive remediation treatments for schizophrenia in particular.Further, not a single paper included consumers in the constructionof measures or the design of the research. Only one paper analyzedthe relation between satisfaction and outcome. The current paper isdesigned to fill this gap and to do so by using a novel methodologywhich puts consumers at the heart of the research.
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PARTICIPATORY RESEARCH
Measuring clients’ views of treatment has its difficulties. Satis-faction studies tend to produce high reported rates of satisfactionand little information on dissatisfaction, particularly when parti-cipants are interviewed by people whom they know have avested interest in the therapy (Rose, Wykes, Leese, Bindman, &Fleischmann, 2003; Clark, Scott, Boydell, & Goering, 1999;Polowycz, Brutas, Orvietto, Vidal, & Cipriana, 1993). It has furtherbeen argued that satisfaction rates in mental health are elevatedbecause of low expectations (Williams, Coyle, & Healy, 1998;Williams & Wilkinson, 1995).
The majority of studies that try to access the views of participantsalso tend to predefine, as well as select, specific types of questionsaccording to what is considered important by researchers and,therefore, key questions that may be important to consumers maynever enter the questionnaires.
Our solution to this problem is to adopt a new approach and seeconsumers not as the ‘‘subjects’’ of our study but as participantswho are the key to developing an adequate measure to assesssatisfaction and dissatisfaction. The novel method adopted hereuses a modified participatory research model (Cornwall & Jewkes,1995; Mason & Boutilier, 1996). This approach has been developedwithin the Service User Research Enterprise at the Institute ofPsychiatry within such different paradigms as the developmentof outcome measures and the design of good practice protocols.In the traditional participatory model, consumers are involved atall stages of the research but a professional researcher is engagedto oversee the project. In our more radical model, the key research-ers come from the same community as the research participants.That is, the researcher is him=herself a user of psychiatric services.This research is therefore not only ‘‘consumer-focused’’ asdemanded by participatory methods but is also ‘‘consumer-led.’’This particular study involved people who receive high levels ofservices and are registered on the highest level of the CPA (aregister which determines the amount of care a patient shouldreceive). The participatory model used in this study was firstdeveloped by one of the authors (Rose, 2001; Rose, 2003) underthe name of User Focused Monitoring. This model has already beenshown to be feasible even with consumers who have a high level ofpsychiatric disability.
Client Satisfaction With and Side Effects of CRT 189
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A further strength of the participatory model is that, because it isfirmly grounded in the experience of participants, it is more likelyto elicit experiences of dissatisfaction as well as satisfaction. Inter-views structured by clinicians may unintentionally bias questionsso that they elicit either a positive response or a response that isnot a priority for consumers.
The participatory method allows not only the generation ofmeaningful questions but can also generate key statements whichcan be tested in larger quantitative data sets. In this study we havecombined the methods: The initial sample used in the participatoryresearch contributed satisfaction and side effect statements thatwere tested in a data set from a randomized controlled trial.
METHODS
Building the Satisfaction Questionnaire
A reference group was convened which consisted of eightconsumers with a DSM-IV diagnosis of schizophrenia who had pre-viously received CRT. The members of the group were all receivinghigh levels of clinical services and none had previously beeninvolved in research except as ‘‘subjects.’’ the group met fortnightlyover six sessions and produced a semistructured questionnairewith mostly fixed choice questions but also some open-ended ones.This group was facilitated by a consumer researcher. The status ofthe facilitator as a consumer researcher builds on and extends theparticipatory model.
The six meetings of the reference group devised a new question-naire without reference to previous instruments. There was noattempt to modify an existing questionnaire as we wished ourinstrument to be wholly user-driven. The meetings took the formof an iterative process with progressive consensus on the formthe questionnaire should take. Both the sections and the questionswithin them were suggested, amended, and refined by the group.This process resulted in a questionnaire comprising six sectionsrelating to: (1) the tasks undertaken in therapy, (2) the therapy ses-sions, (3) relationships with the therapist, (4) costs and benefits ofCRT, and (5) the effects of the therapy on specific abilities such asmemory and concentration.
There were several questions in the interview schedule whichmight not have been included if the questionnaire had been devised
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by professionals. Grounding statements in the experience of consu-mers themselves, especially statements about dissatisfaction, was aprinciple of this study. For example, the group identified costs or‘‘side-effects’’ of CRT (for example, when tasks proved too difficult,this made them more aware of their limitations and disabilities andthis was frustrating and depressing). Further, in the construction ofthe instrument, the reference group paid particular attention to thelanguage used in the questions to ensure it was understood byusing the consumer’s language. For example, ‘‘Did the therapyhelp you get back on track mentally after a particularly bad patch?’’The questionnaire also asked if people would have liked to retaincontact with their therapist and one of the options was ‘‘yes, but Ididn’t want to be a nuisance.’’ This is the language of consumersgenerated by consumers themselves.
Again, following the method of participatory research, two of thereference group became interviewers after receiving training usingrole-play and discussion. By using peer interviewers, the powerrelationship between interviewer and interviewee was reduced.The interviewers were accompanied to the interviews so thatsupport was available if necessary. The study was approved bythe local ethics committee and all participants signed a consentform following a description of the study.
Participants
Satisfaction SampleThe potential sample for the satisfaction interviews consisted of allpeople who had taken part in randomized, controlled trials of CRTor who had received CRT as part of a clinical service. The provisionof CRT was the same for both groups. Forty-eight people were eli-gible for interview and were invited to take part. Seventeen refused,six did not reply to the invitation, one was deemed too unwell totake part at the time of the study, and two did not attend theirappointment leaving 21 people who completed the questionnaire(18 of this last group had received therapy in an RCT).
Participants were on average aged 35 years and there were 15 menand 6 women. The majority were prescribed atypical medication,mostly clozapine. When they had taken part in a randomized trial,the average Social Behaviour Schedule (Wykes & Sturt, 1986) totalscore (SBS) was 11.9 and the average symptom score on the Positiveand Negative Symptoms Scale (PANSS) was 65.9 (N ¼ 18). There
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were no differences in either of these scores between those whorefused and those who agreed to take part. Neither were there differ-ences in cognitive flexibility (number of categories on WisconsinCard Sort Test), memory (age-adjusted digit span from the WeschlerAdult Intelligence Scale, or WAIS) or planning scores (BehaviouralAssessment of the Dysexecutive syndrome profile scores) betweenthose who took part in the study and those who did not. If anything,the group who agreed to take part had a lower score on the memorytests than those who refused (means agreed ¼ 7.25, refused ¼ 8.54;t ¼ 1.92, p ¼ 0.06, 95% CI �0.06, 2.3).
Trial SampleThe trial sample was used to assess our second aim of comparingthe results of the satisfaction study with findings from an RCT. Thissample comprised 85 people who were randomly allocated totreatment or control. There were 43 people allocated to cognitiveremediation therapy, 26 men and 17 women with an average ageof 36.7 years. The majority (N ¼ 32) were prescribed atypical anti-psychotic medication, mainly clozapine. On entry to the trial theSBS score was 11.6 and their PANSS score was 62.8. The controlcondition is made up of 42 people with an average age of 35.7 years,an SBS score of 13.2 and a PANSS score of 56.9. The control andexperimental conditions were comparable on all these scores.
A comparison of the two groups suggests that the satisfactionsample is representative of those people who take part in rando-mized trials of CRT.
Analysis
The results from the fixed-choice questions for the satisfactionsample are presented as simple frequency counts and percentages.Where inferential statistics were possible, Chi-Square tests andANOVAs were used and the significance level set at p < 0.05.
In second part of the interview, participants were asked to rankfive sources of help: medication, CRT, other therapies (e.g., from theCommunity Mental Health Team), housing, and money. Thehighest ranked source of help was given a rank of 1, the nexthighest of 2, and so on. If a source of help was not ranked at all,it was given a score of �9. The group means and standard devia-tions for each source were then calculated (the lower the mean, themore important the source of help).
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The answers to the open questions were subjected to simplecontent analysis. Quotations are given to illustrate common themes.
Quantitative data for participants on the change in theircognitive function during therapy were available for the satisfactionsample and so direct comparison of the statements generated by thesatisfaction questionnaire and the results of the randomised trialwas possible.
RESULTS
The Consumer Satisfaction Questionnaire
The results below are from people who gave answers to the ques-tions. On some questions or follow-up questions some people werenot able to give any answer, but these were different people on eachquestion.
TasksEqual numbers (n ¼ 9) said they had and had not found the tasksdifficult and there was no consensus on which task was most diffi-cult (in fact all participants mentioned a different task). Nearly all(n ¼ 19; 91%) said they improved as therapy proceeded and all saidthis made them feel better. But when there was no perceivedimprovement, 58% said this was frustrating.
SessionsThe majority of the interviewees said that time passed quicklyduring the sessions (81%), that the therapy kept their mind occu-pied (95%), that they liked the attention (91%), and that there werethe right number of sessions per week (91%). Fourteen (67%) weresorry when the therapy ended and five (24%) were not. The reasonsgiven for being sorry therapy ended included that therapy was sointeresting and enjoyable, and that the participants felt that theyhad made achievements but that there was nothing to do after ithad ended. People who were relieved said that they had achievedenough or that it was too difficult or too easy.
Relationship with the TherapistThe group members were unanimous in their liking for their thera-pist. When asked why this was so, 14 mentioned personal qualitiessuch as being friendly, helpful, considerate, and nonjudgmental.
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Four emphasized practical skills such as being a good teacher andexplaining tasks (in fact 20 people said that the therapist was a goodteacher in another question). Sixty percent said that they missedtheir therapist, and 15% would have liked more contact, but didnot want to be a nuisance.
The questions on therapists were intercorrelated. Those whowere sorry when therapy ended were more likely to miss theirtherapist (Chi-Square ¼ 17.6; df ¼ 4; p < 0.001). There was a trendfor those who regarded the therapist as a friend to be sorry whentherapy ended (Chi-Square ¼ 11.4; df ¼ 6; p < 0.07).
General Benefits and Costs of CRTTwo thirds of the interviewees said that CRT had helped them getback on track mentally after a particularly bad time, threesaid (14%) that it made some difference, 1 (5%) was neutral, andthree (14%) said that it had not really helped. No intervieweesaid it had not helped at all. Those who thought they had done wellin therapy were more likely to be sorry when the therapy ended(Chi-Square ¼ 20.2; df ¼ 6; p < 0.003).
The interviewees were asked whether the therapy made themmore aware of their limitations and disabilities. Twelve (60%) saidthis was so, three (15%) that it was not, and five (25%) said they didnot know. Only half of those who were aware of their limitationsfound it frustrating.
The interviewees were asked if the therapy made them feelbetter about themselves. 13 (77%) said it did, three (18%) that itdid not, and one person did not know. However, fewer peoplethought this effect lasted beyond the treatment period. Ninepeople (53%) said they did feel better about themselves in thelong term, seven (41%) that the effect had not lasted, and onedid not know.
The questions concerning the best and worst things about CRTwere open ones. In answer to the question concerning the bestthings, six interviewees mentioned general cognitive improvementswith such abilities as focusing and memory. One person said,‘‘Improved my thinking. I was able to think a lot faster and it alsoimproved my concentration.’’ Five people mentioned specific tasksthey had found helpful and two gave social reasons. Two peoplewere ambivalent even about the best things and the remainderdid not give a response or could not remember what they hadthought was the best thing about the therapy.
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When asked what the worst thing about CRT was, seven peoplementioned specific tasks. Two people said that finishing the ther-apy was the worst thing because it was so interesting and two saidthere was nothing bad about the treatment. Four could not remem-ber and four gave no response. One person mentioned the traveland another said, ‘‘Pressure. Therapy got boring after a while,frustrating to do the same tasks over and over again.’’
Specific AbilitiesThree specific abilities were asked about: concentration, memory,and being alert and focused. Interviewees were asked both whetherCRT helped at the time and whether it helped permanently. Table 2shows that for each area the majority thought it helped at the timebut fewer thought it had changed them permanently.
Trial Data
The satisfaction data generated not only new insights but also anumber of statements that could be compared with the trial dataset. These were: (1) Most people felt they improved on the taskswithin CRT; (2) improvement on the tasks made you feel good,but no improvement promoted awareness of cognitive limitationsand produced frustration; and (3) overall most people noticedcognitive improvement but said this did not last.
Most People Thought They Improved on the CRT TasksThis was assessed for the satisfaction sample by selecting from thedetailed sessions’ data sheets recorded during therapy (N ¼ 19).These session sheets rate the accomplishments of the trainee oneach of the tasks with a four-point rating of accuracy. Improvementwas defined as choosing the first task in the CRT program that theparticipant found difficult and tracking this type of task through
TABLE 2. Specific abilities that improved with therapy
Helped at the Time Helped Permanently
Concentration 17 (81%) 4 (19%)Memory 16 (71%) 6 (29%)Alertness 13 (62%) 6 (32%)At least one of the above 95% 29%
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the module. (This method ensures that a task is chosen early in CRTwhich can then provide data on whether there was improvementlater in therapy). Eighteen out of the 19 sets (95%) that wereavailable showed a within therapy improvement. The introspectivesatisfaction data and the therapist session records are thereforematched. Indeed, it could be said that the participants madeaccurate judgements about their improvement during therapy.
If Improvements were Noticed, They Made You FeelGood, But Lack of Improvement Produced FrustrationThis was tested in the trial data set using CRT cognitive outcomesand self-esteem scores (see Wykes et al., 2007 for details on thesamples and outcomes). The presence or lack of improvement incognition would be related in different ways to self-esteem and,therefore, we are testing an interaction between cognitive outcomeand self-esteem.
For those who improved their memory scores (using the scoringsystem described in Wykes et al., 1999) there was an increase in selfesteem in the CRT group (change in Rosenberg score from baseline31.3 to posttreatment 34.2 paired t-test ¼ 3.00, p ¼ 0.006). However,when memory did not improve, there was no advantage for CRT; infact, the change seemed to be in the other direction, a reduction inself-esteem (posttreatment, Group by improvement interactionANCOVA, F ¼ 3.95, df 1,72 p ¼ 0.051, decrease in the CRT groupfrom 37.4 to 35.4 at posttreatment).
This is an understandable result. For those in the CRT group,improvements on tasks during therapy are reinforced by the thera-pist as resulting from the person’s current cognitive behavior;therefore, participants are more likely to notice this improvementand this then increases their self-esteem. However, in the controlgroup who received only treatment as usual, improvements in cog-nition may be barely noticeable in everyday actions and thereforethey do not have an impact on the person’s sense of self. For thosereceiving therapy who showed no cognitive improvements, there isa decrease in self-esteem that is in fact accentuated when thesupport is withdrawn at follow-up (paired t-test t ¼ 2.3,p ¼ 0.049). Differences in self-esteem change within the groupreceiving therapy are significant (change in self-esteem over thetherapy window, Group 1, improved cognition ¼ 1.46; Group 2,no cognitive improvements ¼ �3.5; t-test ¼ �2.226, df 36,p < 0.05, 95% CI �9.49, �0.44). After receiving therapy and not
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improving in cognition, this subgroup is probably acutely aware ofcognitive difficulties and hence their self-esteem is affected. Thetrial data therefore mirrors the satisfaction data in showing a riskof receiving CRT.
Most Interviewees Thought They Improved TheirCognition, But This did not Last for Long AfterTherapy Was DiscontinuedThe majority of people from the satisfaction sample for whomoutcome data were available (15=21) did improve on eithermemory, planning, or cognitive flexibility. Of this sample it wasnot true that the cognitive improvements in memory reduced overthe follow-up period–where there was improvement at the end oftherapy it was sustained for at least six months (see Wykes et al.,2007). However, in the other two areas, planning and cognitiveflexibility, a quarter of the people did lose the benefits of therapyover the follow-up. For the larger sample there were durablecognitive improvements of 76% memory, 65% planning, and64% cognitive flexibility. This mirrors reports from the satisfactionsample–that about one third of the improvements in some areas ofcognition were lost after therapy.
DISCUSSION
We would argue that this article constitutes a methodologicaladvance. We have modified the traditional model of participatoryresearch by including a consumer as facilitator to the referencegroup. Importantly, the power relationships which usually charac-terize research are reduced because the interviews were carried outby peers. The results of the study have demonstrated the usefulnessof participatory research as a paradigm in generating meaningfulmeasures even with a group of people who were in high contactwith services.
The participatory model we used is the most likely to maximizecriticism of the therapy and yet in many respects, participantsreported that they were very satisfied. This suggests that if themodel of CRT evaluated here were proposed as part of clinicalpractice, then it would be acceptable to potential consumer trainees.
But what is the key to this satisfaction and how does it relate tooutcomes? For these data it seems clear that the relationship with
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the therapist is one important variable. This is consistent with thefindings of Miles and colleagues (2007). Not only did all intervieweessay that they liked their therapist, but, where inferential statistics werepossible, the therapist questions were intercorrelated such that peoplewho were sorry when therapy ended regarded the therapist as afriend and missed them when the treatment was over.
There was, however, no association between improvements onspecific abilities and the questions about therapists. All participantssaid that they liked their therapist but not all achieved improve-ments. When asked about the best and worst things about CRT,nearly all interviewees concentrated on the tasks; no participantmentioned his or her therapist. The tasks must, therefore, have beenseen to contribute to cognitive improvement and so the therapyitself (rather than the process of therapy) is vital to participantsatisfaction with and assessment of CRT. Further light could beshed on this question by comparing computerized CRT with orwithout a therapist present.
In general, if the participant noticed improvements in theircognition then this had a beneficial effect on their self esteem.The suggestion from the consumer reference group that CRT mightmake clients more aware of their limitations and disabilities andthat this would be detrimental was also found in the trial dataset-when consumers did not improve their cognitive skills thishad a detrimental effect on their self-esteem. It is clear thatthis aspect of CRT is a side effect of the therapy and is not justassociated with improvements or reductions in cognition, as itwas not shown in the control condition of the RCT. This may meana modification in the delivery of CRT, perhaps by the therapistbolstering self-esteem in other ways during therapy.
It was clear from the literature review that there have been fewprevious attempts to relate satisfaction with outcome. Althoughparticipants attested to the benefits on cognition from therapy, theywere sceptical about its longer term effects. The trial data also showthat the therapeutic effects were not sustained for all areas ofcognition. For memory the effects were durable; although, forplanning and cognitive flexibility they were not. The explanationof the difference between the two measures of improvement inthe memory domain may be that the improvements are noticeablein the CRT tasks themselves, but may not be apparent in everydaytasks unless someone points them out. This might suggest thattherapy should be lengthened—, something that clearly some
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participants would like—or that there should be an integration oftherapy into the life skills rehabilitation and recovery programsso that improvements are noticeable in everyday tasks. Boththese methods are supported by several authors in the field(e.g., Spaulding, Sullivan, & Poland, 2003; Bell, Bryson, Fiszdon,Greig, & Wexler, 2004; Hogarty, Flesher, Ulrich, et al., 2004; Wykes& Reeder, 2005). The program by Hogarty and colleagues lasts twoyears and includes other training. Spaulding and colleagues’program lasts six months and includes social skills training. Belland colleagues’ program runs for nine months and includes worktraining. Wykes and Reeder (2005) propose a more radicalapproach, that real-life skills should first be targeted and CRT thentied to achieving this goal.
The participants’ accounts of CRT highlight specific issues thatneed further consideration in the development of the therapy.The type of CRT under consideration in this study is different fromothers and it may be that group presentation of CRT (Spaulding etal., 2003) or computer presentation (Bell et al., 2004) would producedifferent or additional issues for consideration. Other therapiesmay also show the side effect of reductions in self-esteem associa-ted with therapy failure; in addition, the side effect may be a furtherfactor in balancing the relative risks and benefits of different CRTpresentations.
Finally, it is clear that satisfaction is not a simple concept. Inparticular, it is sometimes difficult to separate completely satisfactionand efficacy. Some of the questions in our instrument are clearly aboutsatisfaction, for example, the questions about therapists and sessions.However, other questions ask the participants to judge the effectivenessof therapy, for example, short-term and long-term cognitive gains inthe three therapy domains. It could be argued that ‘‘satisfaction’’ withtherapy in such questions is the wrong term. What we have shown isthat the participants’ judgements concerning the efficacy of therapymatch the behavioral data. It is often thought that people with schizo-phrenia cannot give accurate judgements about the effects of treat-ment. So our analysis is important as it shows that the participants’assessments of the effects of therapy compare well with behavioraldata from a randomized, controlled trial. This subtle definition ofefficacy—one in which participants’ self-judgements are regarded asjust as important as those of the therapist—is unlikely to arise inlarge-scale studies which rarely take into account the service users’point of view.
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Limitations
It might be suggested that the satisfaction sample was limited insize and that only half of those approached for the satisfactioninterview agreed. However, this level of response is consistent withother well-controlled studies (Thornicroft et al., 1998). Stallard(1986) even notes that response rates in satisfaction studies can beas low as 13% and our sample was much larger than that. Further,of those eligible for the study, there were no differences in cognitiveor behavioral characteristics between those who participated andthose who did not. However, those who refused to participatemay have different judgements of the therapy itself.
Our satisfaction sample did include people who had droppedout of the randomized study; although, we did not interviewpeople who dropped out of therapy. Again, it is possible that thesepeople would have further criticisms of CRT which were notcovered by this sample. But the satisfaction sample was able tovoice criticisms that may not have been apparent if the consumershad not generated a ‘‘user-friendly’’ questionnaire that waspresented as an independent aspect of the study.
The final instrument consisted of largely closed questions. Amore open-ended format would provide richer data and allowparticipants to talk about their experience with CRT in more detail.However, it is our experience that it is much more difficult to traininterviewers in open-ended measures than in fixed-choice ones.This applies whether the interviewer is a consumer or not.
CRT was provided both in a service and as part of an RCT: thismay affect reported rates of satisfaction; although, it did not inthis study. Investigations, such as Cupitt and colleagues (2004)discussed earlier, that involved less than ideal settings or therapists’training have reported satisfaction rates that are more variable.Given the lack of differences between the two sets of people inthe present study, the results are applicable to clinical settingswhere there are trained and regularly available therapists.
Conclusion
Collaborative research with consumers is not easy for clinicalacademic researchers to do well. There are a number of power rela-tionships that have to be distinguished, acknowledged, and solved(see Trivedi & Wykes, 2002). However, this study has shown that it
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is possible and that consumer-led research building on a participa-tory model can provide a valuable method of assessing therapeuticusefulness that should be employed more often.
We have shown that the model of CRT tested here is rated highlyby those who receive it. This is according to a set of questionsdesigned by people who had received the treatment and interviewsconducted by them. The main side effect of the treatment is that,when improvements are not achieved, there are detrimental effectson self-esteem that could affect future rehabilitation potential.
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