2001 - Patients' And Relatives' Assessment Of Clozapine Treatment

Psrcholosical Medi.ine,2001.3r. 509 5l?. O 2001CambndseUniversilyPress

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Plinled in lhe United Kilsdom

rallents and relatrvesassessment ol clozaplne treatment M . C .A N G E R M E Y E R , I W . L O F F L E R . P . M ' L L E R , B , S C H U L Z E A N D S . P R I E B E [rcn the Depaftnent af Psychiatr!, Unitetsill a.f Llipzis atd Depa mekt of Pslchiatry, Unive5itr a.f Gdxinsen, German!, and Uin far Sacial ahd CoMuit, Ps)'chiatt, St Bartholone||'s ond the Ralal Landan Schoal of Medicihe, Inadon

ABSTRACT Background.Subjectlveevaluationsby schizophrenicpaiients and their relarivesof cloz.rpjne treatmentwere assessed as part of an exploratorystudy. Methods.A problem-centred interviewwascarriedoutwith 80 patientsal dischargefrom in-prrienr Viewsof 46 relativeson lhe treatmentwere also assessed. or day-hospitaltreaL.neni. Results.In addition to expecledeffects(improvementof or stabilisatjonof one'sstareof mental healih.antipsychotic€ffects),patientssurprjsinglyofien highlighredihe calmingand relaing effect of ciozapin€as well as improved sleepas particularly positive.While more than half of rhe respondents exp€cteda worseningofth€ir condilion if theysioppedtakingmedication,only every fifth patientf€areda relapse.Among the negariveeffects.fatigueand sedationw€recjtedby far t.he most often. The absenceof ext.apyramidalside eli€ctswas clearly noted as an advantageof clozapine.Only l0% of those question€dwere awareof th€ risks for t}e haemotopoeticsysrem associatedwith the drug. Differencesw€re found betweenpatienrs' and relatives'assessmenrs particularlywith regardto the negativeellects. Patients and relatives frequently hoid specificand distincr views on ciozapine Conclusions. treatment.Theseviewsshould be consider€dwh€n paiientsand relativesare informed ano wnen complianceis addressed. which form to a large extentthe basisof these clinical studies,are by no meansobjective,bur Sinc€its introduction,clozapinehasbcenstudied subjectively influencedby reflecringthe patients in numerousclinical trjals. Its €mcacy,safery, preferencesand attiiudes (Retzow & Emrich, cost'effecliveness and positiveeffecton quality 1998)-To date, studiesthat focusexpljcitlyon of life are well documenred(Fitton & Head, subjectiveassessments of psychoiropic drug 1990:Mel\zeret al. i990, 1993; Bald€ssarjni& treaimenthavebeentheexceprion(Windgassen, Frankenburg.1991;Breierer d/. 1994;Wagstaff 1989;Finn er a/. 1990;Naber. 1995tD^y et aL. & Bryson,1995;Mofiis er ai. ]998).While rhere 1996;Angenney€r & Matschinger.2000).ThereN a substantialbody of researchon clozapine, fore, the subjectiveview of thos€receivingrhe thesestudiesgenerallyuse standardizedquan- trealment,wast}lespecificconcernof the present titative assessment instruments,aiming at an study.Wewantedto know whatpeopiesuffedng accJtateand objecrjve measuremenr of meol fiom schizophreniathought about neurolephc ca(ioneffecrr. Hosever.rherrclrim LoobjecUvrLytreatm€nt,and especiallyhow they p€rceived overlooksrhat the starementsof the patients, treatm€nt with clozapine.Whal do they like abour rhis medicdrion I Whdr ir badl ln rheir opinion, what are the risks associated with thrs , Addrc{ rb .o,a.ponder-. D MdrnBr . A-gem.)tr€alment?Whatwouldthey expedro happenif Dcplrbenr ol Psyrhirtry. univ.fttry of L.ipzjs, Johannisllc. 20, they sloppedtaking their medicarion?In order I}ITRODUCTION

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1o answcrtheseand other questlons.we carried rntroducloryquestion:'You are rakingClozaril o u l q . r arl r i \ e i r l e n i e u . u i r l \ c h i z o p h r e n i at c the moment. How do you fcel aboul it?'. paljents.For a subsamplcof patients,we also Further queslionswere 'Whar. do you rhink, rherrr(lcU!e5 \ieu on .lo/apine. would changeif you were to srop taking this in\e\tigJLed From th€seslatcm€nts,we subsequendy hoped m(dicutionl dnd Do )ou Lhinkrhar rd,(irg to find hinrs as to what asp€clsmay be of Clozarilfor longerperiodsof time couldteadro importanc€for the patients' compliancewith problemsof any sort?'- Finally, patientsw€re ncuroleplrctreaimenl. askedto compar€th€ir currenlm€dicationwith .le one the) had received pre\iouJ): t.rrlier you also took other medications.Is there any Mf,THOD diference betweenClozanl and the drugs you The studywascarriedout simultaneously at the took befor€?'. The sane questions.phrased Depadmentof Psychiatryar the Universityof slightly dilierently, were also posed to rh€ Gdttingen and at the Lowcr-SaxonRegional rel-ti\es.Inr
Patients dd relutives assessnent o.f clatapine lteutn..nl

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inlo a statisticsplckagewilhour losingreference Tablc l. Clinicd thurudcristic: io the originaldata.In our s1udy,data collecied through the inductivcprocedurewas ihus con ! e r t e di n r oa n S P S S b . ef o r s r a r r . r i , rJnl u l ) s i r . Frequencycounis were carried o!1 for lhe number of mentions in erch category. The McNemar rest was us€d to analysewhether DerNons otpeEaution therc were stalisticallysignificanl dif€rences 272 betwcenlhe padent\ views of clozapin€trea!, ment and lhoseof their relalives In !o1,rl,analysable transcriplsofthe intervie$ wereavailablelb | 80patients.Of lhc I 04patients o n g r n r l y r e J r u i r e dl .8 d ; d n , , r E r \ e r h e i r ugfeemenl$i,h ratirts lhe inlervr($ ln .r\ cases,the quality of the trpe recordingwas too hospibradmNoN (monlht poor 1.)rllow lranscrlption.Ofthe remaining80 patienls, 60% wer€ male- One-third of rhe lengrh or nme on clo,apinc samplewas: under30; belwcen30 and 40; and over40 yearsofage.Sevenly-lburp€r cenrofrhe samplewas sinsle,375% lived on their own, 20% lived with thcir parentsand 175% wirh or parlners. their spousesor parlners. Wilh regard to casesmofiers), 20 8 % werespouses palients 4 l'7o w€re the brothers of sistersand educrlioni 32 5% of the r€spondents had com pl€tedsecondaryschoolbclow O-Levels;32.5% 33 4% wereother persons. had done O'Leveis; and 26% had done AL c \ c l . A m o n gr h es L bL y p eo, f . c h r / o p h r e n r J . thc paranoid type (ICD,g, 29s.3) was mosr RESULTS frequ€nlly representcda! 425%. Or av€ragc, Positireetrectsof clozapinetreatnent pntienrshad b€€nadmittedto in,pxlient trea! Most frequenll)r in almost one,third ol rhc mcnt on five prevbus occasions.The median cases patientsgenerallysral€dthar ihey lelt lenglhofcumulativestay ar the hospiralwas l5 better as a result of clozapinc.The degreeof months. At lhe rime of thc inter\,iew.patienrs rmf'o\ement \arj,J berq(en tr brr', IndisplaledIewerpositivesymptomsand aboul ns creasingiy and 'considerably'(Table 2). For many ncgativesymptomsas the represenraliv€ exampleonepalient said:'I mcan,in retrospeci, sampleol iirst admittedschjzophrenicparicnls I feel beiter. so I guessit must have beenrhe studiedin thc ABC projecr(H,ifnersr al. 1992). nght treatment'. Patients feli helped by the Beforebeingsrvrtched to ciozapine,patienrshad nedication and comparativ€ly well. Some becnlreatedwith up to 13 diilerent traditionai patients(5%) spokeof a stabilizadon:'I f€€I (median:4). On averagc,patjents moresiablenow, not so weal anymor€'.In only neurolepLics had beenon clozapinelor almosr3 ]rears(Table a few cases,palientsmentionedt-hatthey were fully reco\e.cdthanksto th€ treatmenr:'Now I At one site (Gcjftingen),38patientswere feeljustas well as I usedto whenI washealrhv'. questionedusing the'lntcrview on Subj€ctive With strikins frcquency,a favourableinfluence Illness Theory' and again 6 monrhs afler of clozapine on sleeping patterns was discharge.For 46 patients.we also invesrigrled emphasized. Twenty,five per c€Dt of the their closest relatives' atrilude ro clozapinc respondentsmentioned this beneficjaleff€cr. rreatment.Eighreenparienrsdid no! haveclose Clozapinewould help parienrsro sleep: one friends or relatives. In nin€ cascs, parients cooldsleep'well',calnly', 'd€eply'.and even objecled against thcir relarives being inrer- 'l-antastically'.Oneprti.nt staredin tbis regard: viewed.in sevencasesrhe relariles dectinedro 'Well, I would say, it's a bit of a sleepingpill. participatein the stud]. Forry-oneper cent of perhaps, 'cause I alwalrs sleep ihrough tne the relalivesquestionedwer€ parents(in most night . Jusl as frequently,clozapines calming

512 "fabb

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Assessnentof Llozatine tteatment b! patrcnts

Rcdrch.n ot.dgD,riE dclio6

comp!,roi {ilh trdiriomr .flrrepn*

Rqlu@dlosr te de6cn5

eflicl w.rs highlighied.Taking the drug. one would leelcalner.morerelaxed,morebalanced: 'Clozarilrs alsocalmrng. . I meanrheres a kind of substanc€in it ..sone sort of a salt or som€thing...orsome sort of subslance, you Ino$, lhrr make. ,lrr n('!e" uork more slowly...or something ... Wcll, I'm no1a doc, 1or...'Anorh€rpaiientexphDedthc calning ellectas a blockageofbrain fLLnclions'. When askingaboul lhe positive€fl€ctsofcbzlpinc, rts antrpsychoticeflecr was mendoned complrlatively rarely. Among lhese statements,it was mosl frequentlyremarkedtlat the drug caused the voic€sto becomeI'riDter,that th€ latter were onlypr€sentin the eveningof 'upon request',or that thcy had disappearedcomplelely. One parienlwasvcry satisfied:'I dou't scca chancc

lbr lire voices.Yes. this is rh€ onty drug thar managed10 gel rid of the voices'.In addirion, almost evefy tenih palient noliced an anri, depressanteilec!. Clozapinewas idenriied as leadinglo a brighier mood: When l m ralher down and then take thcsetabicts...w€11.rhat helps me all righl' An anxiolytic effect was menriorrd5lighrlrle.. lrequenrl) : 'The"n\r(Le. arc lcssprcsent'.Somepatientsalsostressed the positiveinfluenceon their ability to work and to successfully managetheirdaily lives.Onep,rtient ascribed1o the n€dicine that 'l can spcnd 8 hoursal the universitywilhout anyproblems.. I can go in for sports and things like that hkc everybody else...wirhoul any rcstrictions'. Another group oI paiientsconsideredthe medication as a protectjon from the itlness. ln accordrncclvith lbe stressvulnerability concept, one plticnt argued: And I've got rhe i r n p - e * i o n' h . J r r h r , r u f . l r i e l d sm e r \ d r i . shieidsmy soul.. becauseI'lr1 not very rvell protected,and thrs rnedicine.CIozaril,is more c;Lpable of giving my soul someprotectlon'.A second patjenl also conveyed lhis effect: 'Thereforei! doeshelp...w€ll,b€cause I don't experience rhese irritations as forcefully anymore...causet am a lillle slielded'. trpccrcd ("nscqucn.6 ot a discoDtinurtirin ol clozapin€trertmcnt A further aspect.which is reveahngwith regard b thc cvaluationofihe positiveeficcts ofa drug, is tl1eanswerro the questionas 10 what woutd happenif one stoppedtaking it. Almost half (437%) ofthe respondents expecred a worsening ol thcrr mental staie in that case.Twenty per cenl ()1-thosc quesiionedexpressed the fear they would becomcillonc again'.Accordingto the patienis'judgement,the 'possibili!yoI a relapsc would be quitelarge . For anoth€rpatien!it was . e f l a i I r h " r I f I d r d nr r J " c l | . L h ep . ) c l r o i ' would rule again . One palicn! expressedrhal thc reappeafance of rhe psychosiswould be a rcal calastrophe'.A furlher patien!spokcfrom 'When I leavethar out, the skiesfall expericnce: upon mc . In view of the above-mentioned positiveeilectsof clozapincoD the quality of sleepit is not surprisingrhal l0% of patienls expectedinsomnia if they stoppedlakrng th€ medicalion.Five per cent of thosequestioDcd f€aredtheywould becomemorereslless, irritable a'rd exited/nervous,/flusiered' a-sain.Tlre op-

Patithtt and relativedasesment afclo.apineneatuent

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positecase,i.e.lhat somepatientsanticipatedan patientscomplain€dabout weightgaini '... and iTpro\ementin (herrcondilror.$J\ compdra- I mean,this is a poin!, of course,thal isn't so tivelt rare onl) 75% anticipated such a nicewifi Lhemedica rjon.when] oJ go s$imm;ng derelopmen!.For example.onepalient believed thensomebodysays:'My God, haveyou becom€ !ha! 'wrthout medication,I am able to think fat l' ' ... and you put on somethinglike 10 kilos better...clearer,able to work better, go out in 21v€eks, and thenyou get this tensionin your more in the evenings,go lor walks'. Ev€n lcss belly,asifyou w€reaboutto burst...'.Another patientsbelieved patientiook it with a senseofhumour: 'I don'! frequently(in 5 % ofthe cases), Ihal $hetheror noLlhey take lhe pslchorrol:c really know how ii functions... but the peopl€ drug was irrelevanrto rheir well-being.Thifty" who takeClozarillike myself,they'veall put on five per c€nt of th€ respondents were incapable weight...they'vebecomecorpulent...butId of making a stat€mentin this regard, 125% rather be fat and clear-headed...'.Every tenth answered tiis question with'I don'i kDow'. respondentcomplainedabout orftoslatic hypotension,above all about dizzrness:'Under Negrtiye efrectsof tr€atment with clozapine Ihat Clozaril,thal I wasgiven,I simplycouldnt While respondents on the one hand w€lcom€d work...I slood on the ladderand tlen I got the calming effecl of clozapine, they also dizzy'. Justas frequently,cognirivedeficitswere complainedaboui the sedatingeflectofthe drug cited as a negativeconsequence oI clozaplne (Table 2). More than half of tlose questioned medication. H€re. i! was particularly poor considered lhis to beadisadvantage ofclozapine. conceniraiion\'r'hichpatientsreporredi'... yes, Fatigue/steepiness was mention€d most fre- it's very diffcult to concentrate,to focus on quently - a side effect that apparendycaused somerhing...'. The folowing negativeefiiects of pariiculartrouble!o patientsat the beginningof lhe medicationwere mentionedcomparalilely treatment:'I wasterriblysleepyupon iaking th€ rarely- by a maxjmum 5 % of the respondenls: m€dicatron'.Besidespatienlsfelt muted,wom- sexualdysfunction,increased perspiration.h€adout, even dazedand numb€d. As one patient aches,akatlisia and, as put by the patients,a '. compla:ned: .. yes. ir iu,r d"nrpensqu||e more g€neralIeelingof 'restlessness yes, strongly... 1vh€rthe dosagewas somewhar higher.I feh rather gooey'. Abour one-fifth of Risksof long-tem tr€atnent pith clozapine rhereiponde0r( arrribuled rhelackor .norvarron When askedabout lhe polential risks of long, they felt to ihe treatmentwith clozapine.In mosl term lreatment lvith clozapine almost every cases,the latter manifesteditselfin rhe patienrs' third respondentdjd not kno* what to answer. dificulty gettingup in the morning: lt is really Almost onepati€n!in four deni€dthat this drug difrcuitto getupthen,logetoutofbed...which mJy beaccompanied b) any risk,.\\rlrileonern was easierfor me before'. In addition, patients ien was aware of the risk of damageto the complainedofpassivity,lethargy,and a lack of haemotopoeljc syslem:'This changeintheblood enthusiasmand interest: '...yes, tha! Im count cannotbe precluded... one doesn'treally unmotivaled...beforeI got ill I read a lor and know... the odd persongetsit, and evenif it N dealt wlth intellectualthings,and roday I donl just with l%, thar's bad enough'. Only one do thesetbrngs anymore...it\ relatjlely rare patier! could spellout in more derailwhat kind thar I still readsomething'.For a further fifrh of ofa changein the blood count might be caused lhe palients,hypersalivation wasan aggravatrng by clozapine,bu! he $as not 1oo sure either: concomitantof the medication:'When I wake '...well. lhere'sthis thing with rhe...wi1hthe up, there'salwaysthis stain in my bed from leukocytes...rhafs what you call them, isn't slobbering'.Howev€r,accordingto onepatient's itl-..that this is not such a good thing, view, this disadvantage is offset by clozapine's perhaps...I mean, blood is among tle most positive eFect: 'It\ hue, I've goi salivation impo ant thingsthat man has,you see'. With throughit, bui at leastit allowsme to sl€epfor th€ samefrequency,paljenlscxpressed the fear a few hours'. Every sixth respondentreporred of b€comingaddictedio the drug: 'Yes, I won'r anticholinergiceffects.in which constipaiion be abl€io live witlout thes€tabletsanymoreat was the most frequ€ntcomplaint ('you haveto all. I'm addiciedro them, one could nearlysay, take laxativeswith that siuff'). Similarl) oft€!, yes,dependentonthem'.Ev€rytenthrespondent

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anticipatedthe possibility thai the treatment wilh psychoiropiodrugsmigh! caus€damagelo Euluation of clozlpine6 motrthsafter dischargefrom hospital inner organs.especiallyto the liver. A. de.cribedi. rhe mrrhuLl Comparison of clozapinewith traditional intervieweda subsampl€of padents6 monrhs neurolepticdrugs lalcr. The evaluationof clozapinewas \,irtually As compar€dwilh conv€nljonal neuroleptlcs, idenlic. wilh the resulls al discharg€from patientsclearly preferredclozapine(Table 2). hospilal. This applies to th€ posilive and the Every second respondent criticiz€d the negativeeffectsas well as to the ass€ssment of extrapyramidal-motorside effectsof the tra' the possiblerisk of long{erm lreatment with of the risk ditional neurol€ptics,in particular haloperidol, this drug. Only patients'awareness or stress€dtlleil absenceas an advantag€of that their condirionmight d€teriorarewhenrhey clozapine.Most frequendy,patientsdescnbed stoppedtaking theil medicationwas evenmore symptomsof parkinsonism:tremor ( l already pronouncedthan previously (553% as comhad theshakesor something... in the past... but paredlo 42 1%). The rcsultsof lhe comparison I don t get lhjs anymoreno\'r'...', 'rigidjty belweenclozrpineand other n€uroleptjcs, how('... these drugslotallydesrroyyou...makeyou ever, .emained unchanged: palicnls clearly un.rbleto move and slilf all over... you can'i favouredclozapin€. speal anymore...this docsn'! happen with Clozaril', or: I thought I was made out of Comparisonwith tbe relatives'vi€w concreteor something...1could hardly mole As rneDiioned before,iof 46 parienrs.interviews uhen I 'nol rh.rt 'ruff, and "tinc.ir with theirclosestrelatilesnerc alsoavailable.ln ('Halopefidolwasprobablyslronger... so rhat the lollowing, we will point ou! di[erences somethingswere-.. whcn you rnoved.it felt like betweenlhe two, which. using McNemar'stes!, being a robot, that you re jusl lorally slowed reach slatisticalsignificance(P < 0 05). If one of the posihveeliecls d r w n a n dr h i n g ' i. n $ - l l r n g .' p c r k i n ga. n dr n comparesrhe assessmenl feeling'. Onc paticnt was infuriated aboui the by the r€lativeswirh that by ihe patienls,no sid€ cllecls: 'Let me tell you one lhing: signllicantditrerencescan be found. For bo1h, halopcndolis the list pieceof shit... you waik the g€neralimprovementof the patienis'conaroundlike a robot, and I find it very doubllul dition and the calning effecl were the most that drugs like this are being prescribcdal inpo lnt desirableefltcts of clozapinerreac all ... I meanI would ban them immediatelyif I menl. There are obvious ditrerencesr€garding had th€powerio do thall'. On the otherhand. paiienls'and relatives'judg€mentson the possof a discontinuationoftakjng lhe absence ofakalhisia is cited as an advrntage ible consequences 'With Clozaril...you cansn still . the medication.Mosr skikingly, only on€{hird ofclozapine: By contrastb€ingon halopcridolwas descrlbed oftherelativesdid notknow what wouldhappen asfoilows:'l wasnt evenable1osit down al ihe if padenrssroppedtakingiheirmedication,while table and have my dinner. Yes, it s such a it wasnearlylwo'thirds ofthe patientswho had completeinner restlessness that keepsbothering no answer10 this question.Most frequ€ntly, you ... I neverwalkedas much in my Iite asI did relaiivesexpecteda deteriorationjn thepatients' then . Patien!salsohad unpleasantm€moriesof condition. By comrast, only one-third of the acute dystonia, which had occurred during palienls l'earedsuch a development.The astrealmenl wilh conventionalneurol€pljss.As sessmentof rhe negati\e eflects of clozaprne one patientreported:'T was given haloperidol. treatment revealedrhat weight gain was iess and lhen I got eve cramps. I couldn'i walk frequently identified as a negatrveeffect of anymore.couldn't wash myself anymore,was clozapineby the patientslhan by their relatives. whic-h unableto eat without assistance, couldnt speak The opposilcis true for thos€sid€ciTects, anymore.I had throat cramps, too, and an are not directl!' visible. but may considerably awfui lot of salivalion.And *hen I camehon]c afect patients' wel]-being and functioning: from th€ hospit,rl.they lold me: "When you €a1 hypersaljvationand the aniicholinergic side and drink like thal you might well haveyour effects(aboveall constipationand disturbance dinnerdown in rhe cellar".' of accommodarion)are the mosr lrequenuy

Patiekts und rtlatiws

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ciledundesirable c$ectsin ihis regard.The latter While pslchiatristsare aware of the risk of werehardly noliced by thc relaliveswhile they agranulocytosjs and thuscarry out regular hite rvere frequenrly perceivedas a problen by blood c€ll counts, the palicrls lrere nor !cr) pali€nts The possibjiity ol dxmage to inner -wrr. ol rhe ri.l. J,,ociaredwirh c ozrprne . l \ e \ c r )t e n r hp " t . c nht J J- n o d o n organswasth€ mosl ccnlral conccrnofrelatives r r c r t n r e nOl n with regardto thc risks of clozapinetreatment. of the possible effecrsof clozapine on the Almosl every |hifd r€latrveconsideredit as a haemopoetic sysrem,a nolion that wasgenerally possibleconseqrence of taking tlle nxedication. very vtlgue-Witi ihc sam€frequency.parients By contrast. aboul €very tenth patient was expressedthe fear that they mighr become concernedabout the risk oforgan damagc.Lik€ dependenlon clo./uprne. In CermJl). ar in thepatienls,the relativesalsonotedtrnumberoI mdn, olherruunlries. rbeprorr.ionur crrcn,ire advantages of clozapineover tradilional neuro- and precisejnformation to th€ paiientsabout leptics.They alsorecognized thal clozapin€does the risk of agranulocytosis is a specialformal nol leadto cxtrapyramidalsideeilects- or docs r€quiremenrfor clozapinetreatment.Moreover, so 1()a lesserextenl which are known 1oocuur patients are r€gularly remjnded of thal risk . n L o n i u n c ' i ^ $n i r h l r r d i ' r o n J p l , ) c h u r ' . f t r wb€n they undergoftequenl blood monitoring. drug treatment. Relaljvesfurther highlighted Neverthelcss,90% did not mcnlion it when the reductionofinner unrcst,that accompanied interviewedin this study.Onecanonly speculate the older drugs,xs an advantag€of clozapine. about ther€asons.Paiienlsmight denya seious Somc relativeswere xlso pleasedwirh the fact rjsk that is beyond their inlluenceand avoid thalpalicntswerelesss€da1ed thanwith previous lacingit. The risk may be very theo.eticaland medicrrion.Fu'rher,rhe ab,en(cof rkalhina despreall thc medicalinformation - diflicult to and cognirivedeficitswit-hclozapinelr€atmenl understand.And a mere risk with a low werestressedasanimprovementbytherel^lives. probabiiity of occurnng migh! appearof Uule r€levancein the 1ighl of many other more immcdiare real problems. DISCUSSION Differences are alsoeviden!betweenpatients' The fact rhat palients, relatives and mental and relatives judgementson clozapinet.eatheulrl profe*ionaiscan drfferconsrd<'Jbl) rr menl. This is parricularlytrue lor the undcsired their evaluation of the various posilivc and cff€cls,in which their visibility seemsro play a negativ€efleclsof clozapiDe treatmentis perhaps mdjor parl. While palients more frequenlly the most important finding of our study.While complained of hypersalivation and anripsychialristsprescnbeth€ medicationwith the cholinergicside effects.which remain largeiy aim oI reducingpsychotic symptoms or pre- hidden from others,rchlives more freqlenrly ventrngrelapse.patients stressedthe calmjng werc unhappy aboul 1be patients' apparenl dn,lrcl!xingeffecra. { ellr, lhe imp.ovem
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cluded that patienl inlbmalion and relatile using esiablishcd quantitative scales. Frc_ infonnatior should be speciic and in some qucncicsoi- specificposiliveand ncgativeslarcrespcclsdrlierenl.Appropriate mformation lor mentsaboul rhe lrcatmentsin qnesrioncun be patients should not be dominaled by the analysed,and differencesb€tweeng'oups ntay agfanulocytosisrisk onll, rnd ma) have 1o be tesled for staljstic,dsignificance.This apIocus more on the aniipsycboticenect Th€ proachIbr capturingsubjectiveouicomemjght potendally posiiire sedarivcellccts are to be be regardedas an ahemalive to conventional (rpLicirl)xddr<-ed Di\u..ron. qrLL relar.ve. rrring s.ile. Jise, ing prrienl, lrerrmenr\urshould especialiyadd.cssan adequateunder, isfaciion, self-ralcdside effects,and self-rtted stardjngofweigbt garn.Moreover,the rangeot symptom change.Simiiar nethods might also vi€wsexprcssed within eachgroup. i.e. paricDts prove benencial in evaluating patients' and and rclatives.underlinesthe importanceol a relatives'views on typesof psychiaidctreatment dctailedassessmenl of individual conccrnsand olher lhan atypicalneuroleprics. perceivedeltectswhcn addressingcompliance We thank the rcviewefs fof thcir comenls

on ar

With regard to the comparison between earlier d.afi ot this paper perceplions of clozapiDe andconventionaln€uro lcplic drugs. our nnding may be prone to a sclcctioneflecl as thos€ patienls receivingthis REFtrRtrNCtrS drug are likely 10lrav€found tradirlonalneuro1:000) Neurol.Nh u.d lepticsunacceptable or oilimiled help.Through I-(hLnquili r Ergebfsc dier Pa.Frcnbctrasuns 0,reuF independentcoding and muliiple professional I'f|eur'o d . prb.Dr). A},.hlrrnlhc froi 17 64 63 perspectrvesm lhe r€search lcam. it was tsrlie$arir, R J & FrarkenbuB. R J (r9cl) ctczar,rc: ! novel al1cmp1ed10 lniDjmize bias implicil in the ql Mediht N?h Ehsthtt runat 3u, analysisol qualjlatile data. B, Da{s, O, lrfh. D. Brsed on a qualitative melhodolog)_,th€ Rreier,A, B!.hc'in. R, Krckprrrk, Sunddrfeldr,A. & Crrpenrr. w (1994)Effe$ otctoapr...i pr€sent resulis are hmited in lerms oI onrpa.eih $(h shi-phfera an{n:nn.tau.nlt ol Ptfthial^ r51,20 26 generalizabiiity Howeve., the mertlod was RP & wasner, s (tee6) s.hizophEnr chosenfor a specificpurpose:the explorationof p d,rrerlene(solnonrolaricnediaion rQ-ncrhodotosr the subjectivemeaningspalientsassociatewrth .anAnavno 93 t9t1.4n? the treatmentthey receivc.Knowledgeof how F,nn,M r , Brdey.M . schtrlrz,R 1.& Fabs, R (leeo) subjalvr dihrr ftrinss ol neurol.p.d tr, rernns shmphrcnia ft_rh, prLienls and relatiles lhink ,rndsp€akabout t,snat M!h.h? 1s,343 34t mcdicirlionellectssupplenenttbe pjclurc pro R {1q90) crozrpm: a fvfs of ns phr m s . . g , t p , , . o ! '. . vidcd by clinicalrating scalesand may help to underslandthe motivationslbr compUance. In Hirner. H Rierl,er-Rasls, A., Maurer. K, F rkmrn.r. ! & this regard,lhe presentsludy can only bc ol an riisr, w (lee2) Ftr! on$r rDd errty E!.a/ean /Lht.s lt psrthtah ana chrml e r f l u r r r \ c n r l u r e M o f e d . r r i l c dq J J l i t : , r ' v c sftophre.r researchis neccssr.)rfor obraining a more Holatrser.A, Mildr, P, fnebe, s & Aog*meyd. M c (2001) (rhe u der strh, d* Pdfrdl comprehensive and accurateunderstanding. On l rhr lr!ocn() fJr.ri,r,r.r. the olher hand, our resultscould serveas the b J . i ' i o r d e \ e l o p i n"p T , " , r a n d a r J i , , eidn - K!.kad?. u. (rq933) ptal.sian?l{ y1,iD Han hrch ,u slrument to measurepalients' and relaiives' Mrnuar lof rhe wLnMai ftn wi.do*s sofi*are prck4e for ih. ass€ssment of neurolepliclrcatmeni. rnarlsr ofverbal datx) vindellchq vstns: optad{. This study is an exampleof how inportant Mrfns, P {reeo) Qtottdlx hhdBualrs. lQua|iuriveconr.r ' L h i er' j \ e \ i e $ s . p a r l e r e du r n E q u u t i . c r i r e anaLlet D.utcher Sludienverlaew.inhe'n M c l r * , H Y . B u m . r ( . S , s d a n r B & R r i , ' . 1 - . { r 9 ' r 0 )E t I r . ( iechniquesmay be quantifiedrnd subjecledto sratisticrl analysis The method lends itsclf 10 morewidespread uscand could be incorporated M e L t ' . H . C o l a ,P . W n ) ,r, , T h o n p s . n P j ,l.{!oij Bj Da{grj into largescaleoulcomestudies.ln randonised (r99r) coi eftrrve.es $ntzd!ftetil Ahtat:dt Ja!,nu| 4 P:y conrrolledIn"l. e\dluir!ingneurolep.r(t.ertmenireglmespahenrs!and reiativesviewsmight Mcaon, R K &Kendal, P C (1945/,t6)The Foflsed tnretrs. be assessed as ourcomecrileria in addition to An.krl rautnat at so.iotosr\'t, s1t 55,-

Patients and rclat es assessnentaf.lotapine neahenl Moris,s,Hogrn.T & McGuiE A,(1993) T!. gos-.fre vencs or c ozD T. r .-a.) of 'k., LF L ttarr D.'s t1.4usatl" t5. 1 3 7l 5 ! Nab*, D (199J) A self Bring b beasu. subjrtive efl.cr of ndrolcpric dtusr rehiionship! ro objsriy. psychoparhology. y iablEs.rntehononaj quahy oflife, .onplim€ ud other chnicd:L Clirial Peehophtnhatogr 10lslppl 3), 133-133 R.tow. A & lmrich, 11.M. (1993) Thnapn brpolarr .fektDer ErkFd*unlsn mir Vllproa!. Gcaheni of bipolar aEechve d6ord.u with vlrprort) Pt.hoiitche Pta):25, l6l-t1l

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Wr!*ar, A.J & Bryior. H.M. (1995).Clozpine I Eview otns pham-olog'€l pro!.rircs .nd th.rapsuri.u( in paifr* wnh sb'opbreor *ho .s unEsponsiv.ro or I'iolerMi ot lli$rcal c,\J Dusr .t, r70 .4n0 windga$en, ( 119391.J.ri?,rrr?nkb,hd^d1u4 as d{ siht d! (Tftdmmr of shjzophftnir o len by ldrGnr) Pdiera. L3) w al. 4. t-.dtt.1 d.t q,ahtauel r.1t - rhr.6 Ub4blick nd Ah?nat^n (Merhads olqMharive socialrsar! ove c* rrd akemativesl. crhpus Fnnuun.