ial is

St.John' s

THE IMPACT OF FRAMINGONTHE PS YCHOLOGI CALCONS EQUENCES OF RECEIVING A FALSE POSITI VEMAMMOGRAM

by JeanCook

Athes issub mi t t ed to theSchool of Gradua t e St udie sinpartial fulfilmen t of the

requirement s for the degree of Master ofScie n c e in social Psy cholo g y

Department of Psychol ogy MemorialUniversity of Newf<:"undland

Jul y 1996

Newfoundl and

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Nalionallibrsry orcanaoa AcquisilO'lSand B'btlogranh1cServcesBranch mVic'~SIrOOl

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~b!6~~~~netoree Oirechon desacquisilions el des sevcesbibliographiques 395,lWwelinglon ORawa{OnlarM:Ij K1A ON4

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ABSTRACT

1'h': .,b[cct.ivoeoft.h isstudy was to examine the relatior.sh::"p be t we e n thcLnftInlLnt.erp retat i.o nof an abnormal mamroogram and subsequ,::n:.

i1md ~tytev er s . TheCog~li tive-RationalTheory of Anxiety(La zar u s , I 'J'Jl) , tbe Heuris ticTheory (Tversky '" Kahneman,1973)andcioffi's

{ l~'H} TlOd~1 of Diagnostic Inference fanned the theoret ical r roeewcrkfr om which this relationshipwasexe erned . A total of 29 vcmenpar-tfcLpat.edinthisst udy. Pri o r to a bpeaat;biop s y ,women wereLnt.ervl ewed to determine howthey in t erp r e t e d thei r abnorma l ma mmoqr-am, State and tr ai t an xi etyalon gwith emo t i onal, socia l and ph ys i c al functioning were assessed at this ti me utilizi ng a uo rte a uf standardi zed test s. Ap pr ox ima t e ly 7weeks after the biopsy had be e n performed, subj ec ts we r e re-dnt .erv de ved to

dcL'::rmin~theirreactionto their biopsy result. Sta t e and trai t an xi e tyand emotioni'l l, socialand physLcaI fun c t i on i ngwe r e again asae a s e d . Overall , the irajority of women experien cedadeclinein an xi ety between thetwostudyphase s . Ir r e s pe c ti ve ofst udy phase, women who eitherinter pr e t ed thei rmamn:ogramabnoIll'\C\li t y as being indicativeof br e a s t cancer orsuspende djudg~mentonthe i r cancer sta t us exp erie nced mor eanx i e ty thanwomen wr.o interp r e t e dtheir abnormal mammogram as not being indic a ti ve of cancer. Women ' s init i a l perc e p tion s of an ab norma l mammogram ar e important ant ccede n t sof anxiety.

i i

LISTOFTABLES

Tab le1 Demo g raph i c cha ra cteri sticsof stu d ysampl e.

Table 2 Commo nreac t i o ns tothe initial mammogra mreport.

Ta b l e3 Framing categorizati on ofsubject s (pi-e cbicp e v }. Table4 Pro p o r t i o nof su bjects wi t h high anxi ety stateby frauunq

category (pce-b rcpey).

Table 5 Meanstate and trait anxie tyscoresby frnminqcat.cqorv (p r e- biop s y) .

Table6 Mean score s for the subs calesof the PCQ Ltevieocl] hy framing category(p r e-b iops y) .

Table 7 proportion of women in agreement wi th cac tiof till' I'CQ (r e vis e d ) items by framing cate go r y (p re - bIcc s vj. Tab l e B Feelingssince notificiltion of biopsyresult s by Fr-aminq

category.

Table 9 Summaryof subject'sreactionsto their biopsyrcnu It hy framing category.

Table 10 Stressrating of thema mmogram abno r maltty andbinp nyhy framingcategory(p r o p o r t i o n s ).

Table11 proportionof subjectscontent and not contentwi t htheit- mammog r aphyand biopsyfind i n g s by fram ingcaue qorv . Table 12 Comparisonof pre and postbiopsy means fo r the st at eand

traitanx i e t y subscalesby framingcat. e q ory . Ta b l e 13 proportionof subjectswit h high stat eanxietyscore s in

each of th e framingcategor ies (po s t biopsy}.

Tab l e14 proportionofsubjects who felt that the peQ (re v i fJo<!) items were not applicable by framing cuueqorv (pODI biops y) .

Table 15 Proportionof subjectsin agrement witheach of the pe Q (revised) itemsby fr a ming category (p o s t biopsy } .

Hi

Thisthe a Iais dedicated inlovi ng:nemo ry of Cyril Johncook, who shoeed me howtofind cour a ge andinne r strengthin the face of advera Lt y , Thi sthesis isalso dedi c ate dto alltho s e famil ies who s e 1 i vcs have beentouche d by cancer .

iv

ACKNOWLEDGEMENTS

I wish to acknowledge the support of the Pa-e-Admis eIo n elinLc staff , th e surgeon s and the pathology depar tm ent ot st . creree Mercy Hospital. I wouldalso like totha nk Ms. RhodaHosk ins for her as si sta nce in co di ng the cp e n -ended in t e rv i ew ouestIon s.

Withou t th is support, I could no t have comp l e t e d thisst udy.

I wou ld like to thank bot h Dr.Allen Kwan andMalc o l mor-au t fo r sittingon my thesis advisory committee. A spec ia l tha nks tomy sup erv i sor , Dr. Michael Mur r ay , fo r his adv i s e , expe rtise illld patienceover the past twoyears.

Most imp ort a n t l y , I would lik e to thank th os e wome n who participated in this st udy. Ou ri ng a very stre ssful pe riod ill these women ' s lives , theyunselfishlyagreed to take part inthis study. Theirwillingness an d opennessto share theirexperiences with me was admirable and invaluable. They have contri b ute d greatlyto this ar eaof scient if icresearch.

TABLEOFCONTENTS

Abstract List ofTable s Dedicatio n Acknowledgement s

1. INTRODUCTION

iii iv

1,1 Mammography:AnOverview 1-4

1.2 The Psychologica lCosts Assoc iated 5-8 WithBreast Cancer screening

1,3 The PsychologicalConsequences 8-12 AssociatedWi thA False Positive Diagnosisof Breast Cancer

1,4 Summaryof Studies Reviewed 12-14 1,5 TheCognitiv e - Rationa l The ory 14-17

of Anxiety

1.6 CognitiveTheoriesof Wo rry 17·19 1.7 Cognitive Theories &Diagnostic 19-26

Testing

1,a Hypotheses 27

2. MmUm.

2.1 Design 2.2 Subjects 2.3 Measures 2.4 Proce dure 2.5 Analysis

vi

2B 29-30 30-32 32-35 36-38

TABLE OF CONTE NTS

3. ~

3.1 Phase 1 (pre - bi opsyfindings)

3.1aRe a ct i o n& frami ngof the 39-43 mammogram abnormality

3 .lbThe relations hipbetween 4<\-4 8 framing&anxiety levels

3.J Ph a s e 2 (post - biops y findings )

3.2a Reactionto the biopsy experience <1 B-53

& findings

3.2bTh e relationshi pbetween framing 53-58 and anxie tyleve l s

4. DISCUSSIO N 5• REFERENCES 6.~

vii

59-67 68-70

1.1 MAMMOGRAPHY=ANOVERVIEW

Na rrmcqraphyisa radiol ogica ltechniquethatpermitsthe iden ti fi ca t i on ofbreas t abnorma li t iesthat may prove to be maligna nt <It a clinic all y unde t ectabl e stage. curren t ly , mammog raphy sc r eeningprograms are being esta b l ishedacross theco untry. The aimofthe s e screeningprograms is toreduce urcacr cance rmo r ta lityby dete ctingcancercue cells prior to symptomor-setand to provide the appr opri a t etreatment. Early stud i es ind icate dthat screeningpr ogramscontributedto a 30- 010%redu c tion in breast cancer mort a lityamong women aged 50- 7<1 ye ars (Cuc kl e ,1991). However ,a recent studyhas called into ques t ion the s e find ings (Wri ght &. Mue ller, 1995).

Re s e a rchers are now trying to evaluate these screening programs in te rmsofbothpatientbenefit and all oc a tio n of public he althreso urc e s (Marteau, 1994; Wardle&Pope 1992;

Wrig ht &.Mueller, 1995).

1\s with any diagnost ic test, mammography is not 100 % acc u ra te. Approximately 5%of screening mammograms are in it i ally positive/suspicious (Wright&.Mueller, 1995). The psychological re a c t i on to a susp iciousmammogram finding is one aspect of mammography screening that require s further inv e s t i g a t ion . Womenwho have a suspicious mammogram are required to undergo a br e a st biopsy. The purpose of this biopsy is to determ ine i f the abnormality is malignant (cancerous)orbenign (non-cancerous). Studies examining the

psycho log i ca l impa c t assoc i a t e d wi th a br-enet; biops y IM V'"

con s i s t e ntl y shown that women find und e r g oi ng the biop s)' procedure a stressful experience (Hug h so n ,Co ope r, McAl'd l l' &

Smith, 1988; Mac Far lene [" Sony, 19 92 ; Scot t , 198? ). "'(lInen attending breast clini c s exhib i t highe rleve l s of anx i.ot.vth.m women attendinggenera l surgica l clinics . p'uruhe rtuor-o , t.hlu elevati on in anxi e ty persi st s among tho s e wo men who ;lr l~

referredfor a breast biopsy (Lee&M.:lg u i r c , 197 5). prlor-(0 biopsy, womenexper ie n ce high le velsof Sla teanx ietyand.ru impai r me nt in theirre a s oning abil ity (Sco t t. 19 8 ?') . Anxict.v also remains high while women awa it the i r biops y r-epor-t;

(Ma c Farlan e &Sony 19 92 ) .

Approximately 80 %of the wome n referr e d Eo r a broanr bi opsyafter receiv ingan abnorma l ma mmogra mha ve benig n (ucn cancerous )masses (Wr igh t &Mue ller, 19 95) . Th i s is rororrcd to as a false positive. A false positive is de fi ne d an <Ill abnormal/suspic iousmammogram mass that isfo u nd to bebonL~:l ll upon biopsy or subsequent testing. Given thishighpj-opo rulon of false positives and the anxiety wome n exper ie nce iW d result of the irbiopsy referral, ident if i c a t i o n orthe mod lcu l advantages associated withearlybr e as t cancer dete c ti o nmuct.

be weig h ed against the'psychologi ca l impac t of re o civlnq a falsepo s i t i v e result. The task of behavio ural scIen tLnt.n in this debate wi ll be to id entify the re spon s e pu t t.orn associated with a false positive result and its Jmpact on

subse qu ent;behav i our andemotio na l state.

The purpo se of th is st udy is to examine the emotiona l res po nseto a false positivemammogram. Specifically , how the init i al int e r p re t a tio n of themammograminfluencesthe woman's subs eq ue ntemot i on alstate will be invest iga t ed .

Asstate d prev io usl y, the aim of ca nc e r screen i ng is to reduce ca nc er mort alit y by de t ecting

pr e d i sp os i t i on to cancer prio r to symptom onset. Ear l~' de tect i on allows for medical int e r ve nt i o n and tr eatment.

Roweve r , he a lth pro f es s ionalsare becoming sensitive to the fact tha t there are psychological cos t s associated with screen i ng programs. When evalua t ing a screening program, evaluat orsneedto becon cernedwith the cognit ive ,emotiona l and be ha viou r a l aspectsassoc iatedwithscreening. Evaluation of thesethree compo ne n t sis crucial in the assessmentof the program's suc cess. Th i s eva lua t io n is imperative when re sea r ch e r s are examining the consequences of receiving a posit ivescreen ingresul t tha t is found to be negative upo n fu r thertesting (Ma r t e a u, 1992). Not untilrecently has the psychological component of screening programs been included wi t hi nthe evaluationprocess. In her review of psychology andsc r ee ni ng,Marteau (1994) statedtha t the development and applicationof psychologica lmodels to this area may serve to inc r e a s e the effectiveness of screening programs.

Psychologica ltheories may help to identify those individuals

whoare mostvulnerab l eto thepsycho l og i ca l costsiI~ SOC i"t~'d withscreen ing (Wa rdl e &:Pope, 1992).

Behavioura lscientists ne edto identif ythefacto rsth.rt cont ri bu t e to the anxiet y as s o ci ated wit h maunnoqrap hy <mil further diagnos tic te sting . Be low , the studies t.hut h.rvc- exami n ed theps yc holog ical ef f e c tsassocia t e dwi t h1II.lllll1l0Clrol p h y scree ni ngar e reviewe d . Thefocusof thi sreviewis p rImarily on studies that hav e cx arni.ncd the psyc hol o g i ca l ('m'I'I' associatedwith re c ei v i ng a fal s e po siti v e mammoqrvun. "1"11(' fin d i ng sfromthe se stud ies ha ve beenInco nctuetve. p'urt.hor- re s e a rc h is required in this ar e a to de te r mine wha t Lact.oru axe co n t ribu ting to the se incons iste ncie s . gubuequon r.Iy, possible mediat i ng fact o rs which may contribu te to t1\l~

discrepanc i es betwe e n th e s e stud ies prrauontod . Specifica lly , thecog n i ti ve the oriesof anxietyand WOI T Yal"e applied to this area in an at temp t to account for the variationin emot ionalresponseexhibited by womanwho ro c otve a false positive diagnosis.

1.a THEPSYCHOLOGICALCOS T SASSOCI ATEDWITH BREAST CANCER

~CREENING

Or-I y recently have rese archers beccee con c erne d wi t h

'~'1alu,]ting the psychological CO:3ts associated wit h br e ast cancer scr '?c ni ng programs (Wardle & Pope, 1992). Many of t.uc se studies were conducte d to assess the effects of a ucq ctive mammogramon subse quen t breas t ca nc e r detection pr-acticcn . Thillrcsea rc h questi onhastyp ical lybeenexplored ut i.lizing retr'ospec tLv e measures of change in breast se lf- exam i nat ionfr equ ency andcurrentcanc er fears. One of the firststud iesthat examined theeffectsof attendinq a breast cancerscreen ingpr ogramfou nd thatscre ening did not result .inan inc r e a s einps yc h iat r ic morbidity (Dean, Roberts ,Frenc h 1. Robi nson , 19861. This st ud ywas ca rri ed out utili zi ngIt

eeec t e of 132 wcraen who had negat i ve lnomallbr e a s t scr eening results. Homen were exclud ed frolll this studyi f they had received'1false positi vere su l t. ;:ot'lse que ntly,thefindings fromthis study have limite dgenera lizabli t yandcan onlybe appliedtowomen whoinit iallyre c eiveaneg at i ve mammogram.

The s efind i ngs pr ovideno informa t i ononthe exper-Lencea of womenwho rece ivefals e positive resul ts.

Recen t st ud i e s tha t have examined th e psych ologi c a l .... Lf ects ansociat edwithrec eivi ng a negative mammogram have includedwomenwho have rece ivedfa2sepositiveres ul t swi th i n thei r stud y sa mp l e s. Bull and Campbell (1991) exami ned the

psy c h o logi ca l impac t of a breast sc reen: ng proqr-arn('I I woan-u who rece ivedeithe ra nor mal or a EaLa e posi tiv e m.uumoqr.uu.

Partic ipants comp l eted a que at.Lon naire thnt coutaInod Ll1,~

Hospi ta lAnx i ety andDe p r es s ion Scale (HAD)aswoLj. aB uoll report measures of breast cancer worr ie s and fr C'I Lll"llcy 1'1 breast se l f - examina t i on . The ques tio n n aire WMJ courplct.c-d eithe r pr io r to scr e e ni n g or sixwe eks followiIlg fJCI:e,~ 1lt11<) , Women who completed the qu estionna i r e foll owi1l'J n(: I·C,'11in'! differed wit.h res p ect tot.heirini ti al m<lmmog l-al1ln~H\11\.. ()11'~

gr oupcon sis t edof womenwi thno r maImnnmoq.ra me,anouh m- \1I"O\IP consis ted of womenwhohad su sp ic io u s mammoqramsLha t.tcq uin·d sp ec ia l assessmen t (ult r as o u nd , furt her i-adioloqy , 0'· Iin.' need l e cyto l o g y ) and the finalgroup co n s i sted 01: women who ha dan abnormalmammogram that re q ui r ed a bio psy. All W0Il1 ' ~ 11 had masses/abnormalities that were event uof Ly Lound tn l,n ben ign. There s e a r c h e r s reported thatat te ndingthener0e ll itl~ j program served to he ig hte n the partic ipa nt's awn re neen 01 cance r , irrespect ive of their mammog r a mre suIt. PsychoI0')icaJ Lmp air-mcnt; was no t det ect ed in either women who i.ni vlaljv rece i v e d ane g a tiv e mamm og ram orin womenwho requ i r ed(;p'lciil l assessment . However, psychologi cal impairmen t wasdetrJct(~ dif1 wo me n who required a br e a st biopav. Ten perc ent of t:hrJnr, women required profes s ional co u n se l li ng and pnv c holoqlcal services. These women became cancer phob i c and illCr'l<.!fJ',d theirfrequencyof breast self-examination. rt;appeo r n thiJt

the benignbiopsy re p or t did no t help eliminate th e sewomen 's tears. Thi s studyservedto highlightthat thepsychological effects associated wi t h a fals e positi ve are different from the psychological effects associated wit h an in i t ially ne qa tIve mammogram.

The findings from a recen t st ud y (Sutt on , SaidL Bickler s.Hunter, 1995) designed to assess the effectsof screening mammog r a phy onwomenwhore c e ive daneg a ti v e (normal) re sul t furtherconf irmthene e dto exami nethepsy c ho l ogi ca l response ofa falsepositive separa t e l y fromthe psy ch o l og i ca l res p on s e to aninitiallynegativeresult. Inthi sstudy, anxiety wa s measured atseveral key pointsin the screeningproc e ss(prior to screening, at thescreeni ngclinicandni n emon ths follow- up ). Overall, womenwho receiveda negativeresultdid not experience a significant elevation in anxiety. Howev e r, furtheranal y sisreve a ledthat fo r a subgroupofwomen, those who receivedafalsepositivedia gnos is, anxiet y didincrea se . At ninemon t he follow-u p, the s e womenrep ort ed that the y ha d been extremely anxi o us at sever al points in the screen i ng proces s. Anxi ety was gr ea te s t for th ese wome n upon notificationof their sc r ee n ing report. Th ey al s o re cal led tha ttheywe r emo r eanxi ouswh ilp.at the clinican dduringthe time wh e n the y were awaiting not ific a t i on of th eir biopsy report .

The studiesprev iouslycitedwere designed toassessth e psychological costs and benefi ts associatedwith"ttcndlll9 breast screeningprograms. Speci f.i ca lly, the s estu die swel '<=~

con c e r nedwi t hidenti f y i ng the effec t sof scre en ing onwoutcrt who received a nega t ive mammogram. In additi on to theii- primary object ive , the s e st u di e s ae rved to demooa trat.o that the emotio nalresponse to a ne gative ma mmog r a m d lfLor-u[1' 0111

the emotional re sponse to a false posit ive . The findi nqf3 sugSestthat receivinganiniti a l neg ativ e memrno q r nu i:e' not

.1

dis t ressingevent. Incontrast, women who exper i e nceutaj.eo positive diagnosismay beadvers e lyaffecte dby thescreen i ng process and may be at risk fo r experi e ncing psvch Lrtrtc di f fi culties. This aspect of mammo gn.phyte sting ca nnot he overlooked. Several recent re s ear c h ers have fo c us ed t.holr- attention on id e n t i f y i n g and evalua ting the pnychc LogicaI consequencesof receivinga false positive res ult.

1.3 THEPSYCHOLOGIC AL CONS EQUENCE S ASSOCIATEDWITH A FALSE

aaum (1989) evaluatedthe cost ofbenignbreast rtLaea a e from a patient' s viewpoint . Heidentified the periodpr-forto attending thecl i nic for furtherinvestigationand the peri od:

from schedulingthe biopsy to receiving th e patho logy repo rt:

asthe most stressfultfmc for pat ients. Hestatedth atth e greatest cost of mammography presen ted itsel f in te rtnn of

patient anxi e t y and cancer fears. Devit t (1 98 9) also des cr i bed the anxietyexp e ri e nced bywomenwhilethey awai t their biopsy report as being extremely intens e. Altho ugh examining the ini t ial res ponse to a false posit ive is import ant, researc hersalso ne e dto be awa r eof anylo ng-t e rm cons equences. Both Baum (19 8 9) and Devitt (198 9) focusedon the initia l rath e r tha n the lo ng -te r m react ions of a false positi ve re s u lt. The s e studies he lped to establish that anxi e t yin c reases following abiopsyref erral. Theques tion thatar ise s from the se finding s is,howlong doesthis anxiety pe r sist?

One of the firs t studies con d uc t e d to address this question repo r ted that women who received a false posi t i v e mammogram experi e nced an eleva t i on inmammogr aphy related anxi e t yand breast ca nce r worries. Th i s anxiet y was evide nt three monthsafteradiagnosi sof br e astcance rwas ruledout and resulted in the impa irme nt of the women 's mood and func t.ioni n g (Le rm an, Trock, Rimer, Jep s o n , Brod y " Boyce, 1991). Thes efindings indi c at e tha t thedistressassociate d wi th a false positive diagnosis is endu ring . Th e benign biop sy report did not reduce anxiety. Wome nstill remained uncertainover the ir mammogra p hy and biopsyresults. This uncert.aint y resultedin anxi ety.

Ot h erresearche rshave foundcontradictoryresults. one studymea sured ps ychi a t ri c morbidityusingthe 2B-itemGeneral Hea lth Que s tio n n air e IGHQ- 2 B} . The study'ssample consisted of women who were attending aroutine breastcancer scre en ing clinic, wo men attendinga clinic for further investigationof an abnorma l mammogramand wome n experiencing abnormal breas t symptoms. The GHO-2B was compl et ed in the clinic and three mo n t h s lat er in the individual s' homes. Ini tia l anx i e t y levelswe r e highes t among women whowe r e atten d i ng the clin ic as a result of a mammogr a mabnormal ity . POl' wome n wnoc o subsequen tclini calinve s tigationrule d out thepossibility of breast ca ncer, anxi e t y le ve ls re tu r ned to no r mal at t.bree months follow-up IEllma n, Ange li . Christians. MOSR, Cha mbe rla in&Ma guire ,1989). Thi s findingsuggeststhat the eleva tio n in anxiet y sur rounding a suspiciousmammogram io trans ien t. It appears that enxtety dissipates atter the biopsyrul e sout acan ce r diag nosis. Unlike the womeninthe study by Lerma net al (1991 ) , the women in this studyse e med to be co n fident in their ben i gn biops y report. Thi s conf i d e n ceserved toalleviateanyunce rtai nt ythe y ini tially felt about thei r mammogram abno rmali ty and he l ped toreduce theiranxiety.

10

A sh lilar st u d y was undertaken t.o assess the qualityof life fo llowi ng a false posit.ive mammogr a m (Gr am, Lun d 5.

s lenker, 19901. Women....ho rece ived a nega t i ve mammogramand women who rec e i veda false posit i ve mammograll' completeda posta l questionna i re six ecncbs after thei r screening malllKlO9r a m.Eigh t e e neca thaaft e r scr e e ningthe sa mesampleof women took part in an int erview. The purpo se of th is interview ....as to asses s the long- term impac t of th eir mammographyexper ie nce. Women with a fals e positiveres u lt hadhighe r levelsofbre a s tcanc er anxiety than those who had re ceived a ne g ativ e resu l t. Six monthsaft e r a diagnos i s of breast cancer had been ruled out,40% of the fals epositive group continuedto exhibitafear of breast cance r. Thi s fe ar persistedand was still evident in 29tof the s e women 18 months after tl:e malMlO9r a phywas performed. Fi ve percent of thesewo menrecalledthat; their false positivewa s the wo rs t th il19t.hat ev erha ppened to the m. Althoughthe re s ea r c h e rs concl uded that the IIaj ority of wanen who recei ve a fa l se positi v e do not ex perien c e a decline in their subsequ en t quality oflife,a subse t of ....omenappeared tobeadvers ely affected by this ordeal. Fur the r re search is requ ired to cl ea r ly identify thechar a c t eri s t icsof this subset of....omen.

11

Ther e were certain problems in the design of the abov e study. Gram andcolle agues (1990 ) iden t i fi ed the design of theirquestionnaireas a weakn ess . Al th ough the queut Lonuaii-o

was inten d e dtc measure the str e s s women exper-Lenc od duo to theirmammo gram experience, the ques t i onna i r eit emsactualt y gauged at t itude s towa rd longe vi ty rat her than theLnt onde ct construc t of anxiety . Theuseof sucha me asure to<lS8eSSthe construc t under invest ig at ion , raises qu e s t i ons about the st udy ' s interna l va lidity. If the re sea r ch e rs had ChOHC'1l,.

moreval idmeasureofanxie ty, thepatt ern of res u lt sobtalned might ha v e been diff e rent . Fur t her res ea r c h wi.Lli mo t"c appropr iate mea s u r es is neede d to add r e s s the o r-LqinaI res e arch quest i on.

1.4 SUMMARYOF STUDIESREVI E WED

Bas ed onthe studiesreviewed, no firmcon clusi o ncan be made with rega r d to the psychol og i cal conseq uence:'>of receivinga falseposi tive. Someof thediec repanc icebe t ween studies can be explai ned by diffe rent reueaz-ch de s Iqnn , meth o dolog i es and choice of measuremen t inst ru mcntn . 'rho majority of stud ies re viewe d hav e employed ret ro spec t i ve designs or measures. The r eare seve r a ldrawba ck s asnoctate cr with thisty peof research method . Sut t on etal (l995) sn. atcd

"... women's memoriesof theearlierst ages of screening larrc:J ta i n t e dby thei r lat erexperiences" (pAl?), Thinst.etceo nt;

12

Ll Iustrate s the major drawback associatedwi t h retrospective measurements. Recallof events may be biased by more recent events. At the time of mammography testing and prior to biopsy, womenwhowe r e eventually diagnosed as false positive may not have been more anxious tnan those women who initially receiveda normal mammogram. W:"en askedtu recal l these events, women who received a false positivemay be unableto disassociat e the actua lanxietytha t theyexperiencedat that time fro man x iety they experienced th r ougho u t the whole orde al . I f a prospectivedesign had been employed anxiety couldhave been measured priorto biopsy. This would provide the research erswith an unbiasedmeasure of anxiety at this stageof the mammography pr oc e s s.

Methodolog ical and research design aside, cognitive theo ri e s of anxiety may shed some light on the inconsistencies in emotional responses to a false positive diagnosis. Pre vi o u s researc hhas demonstrated that cognitive theories are useful theoretical frameworks for studying the origins of emotions (Smith, Ha yne s , La za r u s & Pope, 1993). Cognitive theori e s have beenappliedto the areas of anxiety and worry.

The research conducted in these areas utilizing cognitive theori e s will be reviewed in thene x t two sections. In the fina l section,the value of applyingthese cognitive theories to diagnostic testingwillbe presented. Specifically, this section willdeal wi t h how cognitive theories can facilitate

13

our un d e rst a ndingof the emotion a lre ac t io n sthatai-t sc^{iW ,1} consequenceof ma mmographysc r eeni ng.

1.5 THE COGNITIV E-RATIONALTHEORYOF ANXIETY

Cognitionsplay anintegral ro lein our respons e to 1irc events. Our emot i onal reacti o n to any given sIt.ue t. Ion l s di rectlyinfl u en c ed by our cog n it i v e Lrrt er-p t-et.atLouof lhill situation. The cognit ive -mot iva ti onal theory propoeed by Lazarus (1 99 1 ) is one of several cogn i ti ve the o ries t.u.u.

attempts to expla inthe rela tions hipbetween co qnLtLonn ilnd emotions . The basic tenetof thi stheor y isthatooq ulLtonu are important antecedents of emot i o n a l respo n s es. 'rho emotionalreaction toa given encoun terisde pendentupon the ind i vi dual 'sevaluati onofthe encoun t e r . Thepurposeof thifJ evaluat ionis to determine the effec t ofthe encoun te ron th'l individual's well -being. This is re fe rred to an the appraisal process (Smi t h & Lazarus , 19 90 ). nceea rc hcr u adher ing to the cognitive-motivat iona l the ory haveshownthet;

how an ind i v i d ua l init i all y appraises th e u Icu ntron wiII greatly influ e n c e his/ he r subseq ue ntemo t i o n a l state(Gllo v idl 1990, Grif fi n, Dunning& Ross, 19901.

Within this theory, there are two ty pes of coq ni.tLonn importantin the formationofemotions. They a r e ref e r re dto askno wl edg e and appraisal (Smith , Haynes, Laz ar us it Pope, 19 93). The s e two cognitions dif fer with re sp ect to thoLr

14

direct; impacton the resultant emot i on . Kn o wl edg e influ ences emotion indirect ly. It refers to the indi vi du al' s repr esen ta tionof thesi t ua t i on . Thisrepresenta t ionreflects theindivi dua l' s beliefs orknowl edgeaboutwhat is happenin g . Once the representation (knowledge)is forme d, it is appraised in te r ms of its si gn ifi ca nce for perso nalwell -b e ing(Smi t h&

r.a xa r us , 1990). Th i s Letter pr oce s s is re f er r e d to as the appraisal. The ap praisa lprocess is a subjective evalua tion of the knowl.edge , wh i ch dir ec t l y influenc e s emotions . Consequently, two ind i vi dual s could const ru e the same si tuat ionilldsimilarmanner (agr e e on al l the fact s), but the y mayexpe r i e n c e different emotions bec a us eth eyap p r aise the ::>ignificanceof the sefacts (knowledge) differently. For example, twoindiv idua l s may bo thexpe ri e nce the deat h ofa loved one. Both individuals wi ll ag ree that this was an unpleasa nt experience . However, one of the two ind i vid ua ls may evaluat e thi s situation in terms of a bless ing. Thi s indivi dual may perceive dea th as end i ng their loved one's sufferi ng . They mayalso per ceivetheindi v i dua l aslead i ng a full life. Thistype ofapprai s a lmayca us e the individual to ac c e p t the deathof the loved one and to mov e on with his/herownlife . Incon t ras t, the otherind i v idu a l mayview this deat hin termsof a loss. Thi<:Iindi v i du a l may foc u s on howmuch theymiss thelov ed oneand why this had tohappen.

This type of appraisal of de at h may resul tin fe e ling s of 15

depression and anger. In the above scenar i o , the S<lmc situation was appraiseddifferently and pr-oduceedtwoctltro rout emotions in the dif ferent indi vi du al s. The .rbo vo cxampto demonstrates the subject ive nature of thenppr-ajsaL PI·OC,-'ss . Although both the ind iv id uals agreed that the event Wil H nega tive they differedinthei rappraisa l of thi n neqarl vitv. The difference in the appr aisal proc e s s led La tilt' manifestationof two differentemotion s.

On c e the appraisa l process is comp lete, i1 ", :n l ' - re l a t i o n altheme " emerges. The core rela t i onal thomo ifl ,I molar level of analysis that consti tu t e s a enmna r-y or till' person'srelationship to the env ironment. This rola tiourrhip is expressed in te r ms of either a ha r m or a benef jt . 1·'01 example , theemotionknown as anxi e ty is produc e d fromLIcon ' relational theme of an ambiguous da nger . When LIn .lndi v Lducl appraise sa situation asbe i n g harmfu lordang e r ous to his/h er well -being, anxietyemerges. This corerelational theme' inil summat iveform of analys is and doesno t: provideany douoIIn about the specific cognitive decisions that wenl into evaluating the situation as dangerous. When cxam Ln Lnq tho etiology of emotions, it is importantto consi d e r the lact.o r u wh i c h contributed to this overal l evaluation. For exempLe , whe n studyingth e originof anxiety, it isno t auf Ef.cient, Lo know tha t the individual appraised the situation "w boinq poten t ia l lydangorous to his/her well-being. Wen'~ 8dto b.:

16

cognizant ofth espe c if i c factors that led the individual to appraise the situation in this manner. Therefore, it is necessary to supplement this leve l of analysis with a molecular form ofanalysis. A molecu larlevel of analysis allowsusto identify and examine the questionsand responses th a t generated the core relationaltheme of a dange.r/threat. Many researchers have applied the concepts of this theory to the a rca of anxiety. Cognitive-motivational theor i sto propose that "anxiet yariseswhen existential meani ng is disruptedor endangered as a resultof physiologicaldeficit, drugs, intrapsychic conflict and diff icult-to-interpret eve nt s' (Laza r u s , 1991, pg . 234). In order for anxiety to occ ur. the ind ividu a l must perceive the event as being personallyrelevant and its outcome as being negative. The individualmust sense that he/shehas little controlover when thi s event lIIi11 happen and must have limited coping abilityto deal with this event. This type of appraisal le a d s to the core relational theme of an ambiguous fear and in v okes the emotion known as anxiety.

1.6 COGNITI VETHEORI E SOF WORRY

Cognitive theories have also been utilizedby researchers st u d yi ng the etiology of wor r y . "Worry is a cognitive phenomenon, it is ccncernedwithfuture events where there is uncertaintyabo u t the outcome,the future being thought about

17

is a ne ga t i ve one , and this is accompaniedby fe e l ings 01 anx i.ety"(MacLeod, Williams&Beker i an, 1991 , pg ,471\) , \'lO tTy is often referre d to as the cognitive component of anx lotv (Bork ove c, Robinson ,Pruzinsky&DePree, 198])_ Co n sintent with cogn i t ive- emot ional theory of anxi e t y, an tmpor-taur;

component in th e origin of wo r r y is the LndivLdu.rl'H

expectation tha t an aversive event will OCCIII', M;l1ly researchers ha ve utilized judgement theories andhou rist,ic theories to explore this component of wo r ry (norkovnc ,_ot al,198]; Smith et al,1993), Acc ording to the ucurlnttc perspective, whe n an ind ividual is facedwith a uni q ue IiI(~

event, he/shecreates a sce n a r i o {he ur Ls t.Lc ] of tha t. cvr-ut.

Howea s ily this scenario comes to mi.nd will Lnrtueuco t.1H~

individual'sjud g e me nt of theevent's like li hood, Theap p lic a t i o n of this theo ry to ch ron t c worrLo ru n.ru shown that chronic worriers and non-wor ri ers cltrc r wilh respect to howthey construesimilarevents (Mac Leod or.

i,

I, 1991). Chronic worriers have a tendency to cr e ate noq atiV0 heuristics. They are able to generate nu me ro u s re a eonnt.o account forwhy a negative event will occu r. In co n t.r uu c . they are unable to generate reasonsastov.hyuncqc tivo cvn ru;

will not occur. Why is it thatch r o n ic worriersca p ori cnoo thisimpa i rme nt intheir cognitive abi li ties?

To answerthis question, it is necessary to cona i.der r.ho salience of the existing heurist ics, It has be e n proprmr:d

18

thu t; one" a heuri s t i c hasbe en createdfor an event, it may lmpe de the development of simil a r he uristics tha t le ad to diffc r ent;ourconer (Tversky&Kah ne man, 19731 . Onc ene ga t i v e heurLa tics are forme d ,they may ac t asfilte r s and distort new inf o r ma tion in a manner that is consistent with exist ing heuristics ta r c kcv ec et OIL 1983). Cons eq ue ntl y , an ind i v i d ua lmay ma i nt ai nth at aneg a ti veevent will occureven when conflicti ng infor mat ion ext st;c. The indi v idual interpretsthisconf ll c ti ng informa tionin a manner that is consis t en t withthe negative heur i sti c. The assimilationof informa t i on in accordance with the he uri s ti c, helps the lndividuaI mai nta i ntheorigin a lheu ri stic.

1.7 COGNITIVE:THEORIES&DIAGNOS TI CTESTING

Asdemonst rated thusfa r, cogn itive the o r i e s have shown thatwhen anind i vi d ua lev a l ua t es a situationin terms of an vamn iquous chr e a tehe/sheexperiences anxiety. Likewise,when

'l l l ind i vid ua l cr e at e s aneqa t.Lveheuristicfor an eventth i s

heuri s tic ma y pers is t even in light of contradictory informa tion. 'These cogn itive theoriesmay help usunde r s t a nd peopl e 's rea c tion to screening and diagnos tic te st ing .

Cogniti ve theo ri st s propose tha t emotional responsesar e tbe result of anindi v i dual s ' s subjective evalua tionof the

:Jituation. The anxiety associated withanabnormal mammogram canbe viewedwithinthe con text of the cognitive·rational

19

perspective. A woman who receives an abnormal ntannuoqrvun. 1ll,1y perceive th is diagnosis as a negative event that could be;I

signofphysical harm. Since further testing Ls i-equi r-ed to determine if thisabnormalityis cancerous or not., thl~woman may be uncertainas to what this testingwil l reveot. 'I'hin uncertaint ywould causethewomen to focus on the question "Do I havebreast cance r? " In terms of the cognit.ivemotiva tlouat theory , some women may respond "no " to this qu e s t i o n . 't'hln response set would notresult in a cor-a r e LetLone I theme of:il l l

ambiguous threatan dthu s anxietywo u l d not arise as a ronult of this ty p e of appraisal. Alternatively, if t.ho woman responded "yes" to this question, a core relationaltheme of a threat or danger wo u l d emerge. Th i s Lnd LvLd ua I wou l d anticipate a diagnosis of cancer. This spec ItIc app ruinilI wouldresult in a core relational themethatwo u l d cnu sc the individual to expe rie nce anxiety over the upcoming biopsy. Th ecognitive- emotional the o ryhia plausibleexp Lanat Lonfor thein i t i a lan x i e t y associatedwi t h anabnormalmammoqram and the biopsy procedure.

Th e nextquestionthatneedsto be addressed is howdoe r;

the cog ni t ive -rational theory exp lain the vcrLatlcn individuals di s pla y intheir adjustmentto a false POfJiI;iVC'f To answe r thisquest ion, it isimp o r tan t to remember thiltth'~

appraisa lprocess is dynamic not static. Asknow l e d g e in t.he environment changes, so wi l l the appraisal. when women

20

rcceIve their benign biopsy report, theyga i nnew knowl e dge.

Thi s newknowledge canbe used toru l e out a di ag no sis of However, recall that the appraisal process is sub j e c tive in nature. Different wome n may appraise their biopsy report different ly. For example, one woman may perceiveherbenign biopsy as being freeof cancer. Thistype o[ appr aisal would result in relief . The woma n wouldno longer fea r that she had cancer. she would be certain that she was healthy. This type of appraisal would serve to eliminatethecor e relationa l the me of anambiguousthreat of apotent ialcancer diagnosis. In contrast ,anotherwoman who also receivesabenign biopsy report mayremain fo cu s e d on the uncertaintythatsurrounded her originalmammogram. She may evaluate her biopsy reportinamannerthatis notind i c a tive of bei ng healthy and free of cancer. Thiswoma nma y question the accuracy of the biopsyreport and remain convincedthat she has cancer. Thus the core relational theme of an ambiguousthreat wouldpe r sis t andanxietywouldremain high.

Theincons i s t e n cie s in the studiesrevie wedcan also be acc ou n t e d for in terms of the heuristic pe r sp e c t ive . Ini t i ally, women who receive an abnormal mammog r a mmay show variat ion inhowthey construe thi s event. Some wome n ma y create a predominantlynegative heur i s ti c of this eve n t ,which wo u l dle a d them to concludethattheyhave breastcancereven befor-e the y havethe i r biop s y. In co n tras t . othe r women may

21

createale s s negative!heuristicof theeventan d even s unpend judgeme nt of their cancer status until after they have recei v e d their biopsy repor t. These wome n may prefer 1:0 perceive themselves as being cancer free until ot he rw loo in f orme d. Consequently, these latter wo me n wi ll r-eadi jv ac c e p t t.heir be n i g n biopsy results. 'rhe new know l edqe containedwithinthe biopsy report wi llbe easi lyaeeim.iIntcd wi t h i n their existing heuristic fo r the event. 't'he ue W0 111('n

will experience no long term p s ycho Log Lcal, ettect.u from the experie nce. However, women wh o have created a no qattvo heuristicfor this even t mayno t be abLe to rend!Iv accep t.

thei r benignbiops yreport. The negativeheuristi cthattlloy have cr eat e dmay serve to distort theinforma tio ncon ta ine d ill the biopsy report in a manner that is consistent withtil l :;

pre-es tablishedheuristic. Thisdistort ionwouldle a d them to lack confidence in theirbiopsy report. 'rhese wo men would mai nt ain their belief that the y have breast cancer ovon in light of their beni gn biopsy report. Con sequently, thonc wome nwo u ldno t exp eriencea re ductionin an xiety.

Cioffi (1991) inc o rpo r a t ed features fr o m the coqnlctvc- ra t i o n al theory and th eheu r i s ti c theoryto form a model unod to expl ainframingeffects indiagnostic inference. Ac c ordinq to this model, any diagnostic test result is a lwayn judqcd relative to one' s pe r c e i v e d healt hstatus. Inother- wo rds , pri or to re c eiv i ng a test result, a perso n La beLs his/hllr

22

he a I c h status in ter ms of weLfne s s or illness. The in d ivid ua l' s hypothesis reg a r di ng his/her health stat us is confirmed whe n thediag no stic tes t re s ul t s correspondtothe initi.al hypothesis made. However, whe n test resultsdo not confirm the individ ual's hyp o t hes i s , an uncomfortabl e sftuat Lon exis ts. The ind iv i du a l lacks ag reeme nt betwe e n his/her perceived disease status and his/herac tual disease statusas reported by the diagnostic te s t . At thispoint, the indi vid ual doesno t readily abandon his/herprevious disease status perception. The indivi dualhas created a heuristic fo r hi s / he r diagnos tic ex perience. The formation of this heuristic may dis t ort th e in f o rma ti on cont aine d in the dia g nos tic test in a ma nne r that is consiste nt with the presentheuristic . Since the diagnost ic te s t resultcannotbe re adily as s i mi l a t ed wit h i n the context of the pr esent heuristic, theindividual may displa yala c k of con fi d e n c e in the diagnostic te s t results . Thislack of confidencewo u l d motivatetheind i v i d u a l tocontinua lly monito rhi s /her dise ase status. Such a sit u ation is bel i e v e d to result in the imp airmen t of th e individual'spsychological wel l - b e i ng . For example, prior to diag nostic testing an indivi d u al could convince him/herse lf that he/she has cance r. This would result in the creationof a heurist icinwh i chth e indi vidua l wo u l d an t i ci p at e a dia gnosis of can c e r fr om the te sting.

Under thesecon ditio ns, a diag nost i c test resu l t ru ling ou t 23

thepos si b il ityofcanc e rwould notalle via t etheindi v i d u ill 'f1 fear s. Thi s diagnostic informa tion contradicts the well- formed heur i st i c. In evaluating the diagnostic te s t. the individ u al may fe e l qui te confident that th ei r cr-i qtnal heurist ic ....as correct and tha t the diagnost ic test itt disc r ep ant. Th e individua l wou ld conti n ue to beli e ve ttvu he/shedo es haveca n ce ran ddisre gar d the i rte stre po r t . Th ill evaluat ive re s p o nse wou ld cause the ind i v idual to have .1

pr eoccupati o nwit h their he a l t h status and displ ay anx tetv over the continu ingpos s ibili ty ofhavi ng canc er .

As sta te d previou s l y, women who re ceive an abno rusr l mammo grammay demons t ratevariab ilityin how theyappr-aino and framethi s diagno sticinformation. Pri o r tobi op s y , womenma y pe r c eiv e thems elve s as either havingor not ha v i ng br-onut, ca ncer based on how they appra ise theirma mmog r<1phyrcnutt,•

In additi on , otherwome nmayop tto suspendjudgementon Lh.d r cance r stat us un t ilth e yha ve rec e i v e d no t i ficati o nof t helr- biopsyre po r t.

It is hypothe size d tha t all women will cy.p<!rienc f!

elevate danxie tyupon not ificat i o n ofan abnormaI mammoqr'lIn finding. This increas e in anxiety is predic ted to be associated wi th how the individua l ini ti a l ly [riJmf!9 thlu diagnostic in f o r mation. Womenwho appra ise and Lrame thin information as be ingeither indic ative of ccnc cr or opt 1.<) suspend jud geme nt will experienc e gre ater leve l s of anxLety

then women who appraise and frame this information be Inq ind i c a ti v e of cancer.

In the case of women who perceive themselves as not having breast cancer, the negative biopsy report merely

con fi r ms their existing beliefs. Hence, agreement is

maintained between the perceived disease status and the actual negative biopsyreport. We wouldpredict that these women would experience no psychological impa Lrment;.

Irrespective, however, of their negative biopsy report, women who perceived themselves as having cancer prior to their biopsy may not readily abandon their initial perception.

These women will tend to call into question both their health status and their biopsy report. They will be less confident of their negative biopsy report and exhibit a tendency to focus on the uncertainty surrounding their mammography result.

Consequently, these women would be expected to experience psychological impairment. Finally, the information contained in the negative biopsy result can neither be confirmed or rejected by those women who have suspended judgment. These women have not perceived themselves as having or not having The information contained in the negative biopsy result is predicted to be readily assimilated within the women's heuristic for this event. These women are also not expected to experience psychological impairment.

25

Thepurposeof thisstudyis to describeand exami ne how wo me n whohave received an abnormalmammograminit i a l l yfr-amc this eve n t. specifically. it is the in te nt to examine how this framing is associatedwith anxiety le ve l s bot hprtcrto biopsy an d subsequently af te r notifica t ion of the bioP9\"

fin dings .

26

1.8 HYPOTHES ES

1). Prior to biopsy, women who receive an abnormal mammogram will experience anxiety. The extent of this anxiety will be dependent upon how the individual initially interprets her mammogram abnormality. Specifically, wo me n who init i a lly interpret theirmammogram abnormality as being ind i ca t i ve of cancerwi ll experiencemore anxietythan women who int e r pr e t their mammogram abnormality as not be ing indicative of cancer. Women who opt to suspend judgement on theircancer status willalso experiencea higher level of anxiety when compared to women who int e r p r e t their mammogram abnormality as not being indicative of cancer.

2). The duration of thisanxiety will be dependent upon how the individual initia lly interprets her mammogram abnormality. specifically, womenwho initially interpret the i r mammogram abnormalityas being indicative of cancer will still experience an elevationin anxietyeven after the y receive a benignbi op s y report. WOI~enwho initially int e r pr e t their mammogram abnormality as not being ind i c a t i ve of cancer or opt to suspendjudgement until notification of the biopsy reeuLt; wi ll experience a reductionin anxi ety.

27

(2 ) METHOD

2.1 Design:

Th i .. is a quasi-experimental design. To tesl the hypothe ses, a prospective longitudinal study was conducted.

Anxi ety was measured prior to biopsy and approximately sixto eight weeks afte r the women had received a benign biopsy repor t. St ruc t uredintervie ws were conductedby thep rLncipaI inves tiga t or one week pri or to biopsy and si x to thirteen we e k s followingno tifi cat ionof biop sy outco me. The purpone of the first interviewwas to desc ri b e howthewome nreacted to and ini t ia lly fram ed th e ir ma mmogra m abno rmali ty. 'rbe purposeof the secondin te r v i ewwasto descri behowthewomen re acte d and subseque ntl y interp r e t e d theirbiopsy report.

This study was submit ted to and approved by the uueen Investig ation Committee of Memorial university at Newfoundland. Followingapproval from this Committee, t.hla studywas furt he r submitt edto theHe a l t h care Corporationof St . John's Medical Advisory Committee where approval WiJfJ obtaine d to co nd uct thi s study at St.Clare's Me r c y noeptt c I andthe General Ho s pi t a l, St.John's, New f o u nd la nd .

28

2.2 Subjec ts:

Ato t a l of 52womenreferred fo r a breast biops y aft e r re c eivi ng an abnormal mammogram result were invited to participate in the first phase of this st udy . Sixwomen elected not toparticipate inthi s study. The first five women served in the pil ottestcondit i on. Threewomenin the pilo t test condition had benign masses and two ha d malignancies. All sub j e c t s in the pilot condi tion were excluded fromany fu rt he r analysis.

of the remaining41wome n ,]5receiveda ben ig nbiopsy repo rt and6rec eiveda malignant biopsyreport. Women who obta ine d a ma lig na n t biopsy repo rt were exclude d from the secondphase of this study. Of the womenwhore ce i v ed benign biopsy reports , 6 were not available to take part in the sec ond phaseofth i s study dueto othercommitments. Thus th e fina l sampl e consi s ted of 29 women who received a false positive mammogramr'eeult; • Table1contains the demographic datafor this sampleand the subject 'sre a s e n i ng behind having had a mammogram.

InsertTable 1Here

As Canbe see fromTable1,the majority of subjects were marr ied ,had received some post secondaryed uc ati on and lived withinthe St.John'sregion, Themean age of subjects was 49,

29

with the ages ra ng i ng from 37 to 72. Most women had h.:lda mammogram bef ore. The aver ag e numbe r of pr iormammogramswa u 3, App r oximat el y one ha lfofth e sample were sent for the i r mos t recent mammogramas a routine meaeu.re• All subj e ct s re porte d th a t th e ywo u l d hav e amammogram inth e future.

2.3 Me a s u resI DependentMe asures

Le vel of Anxiety. The 40-itemSpielberger suete-u'vatc An xi ety Inv e nt o r y (STAI) developed by Spie lbe rger (1983) \<I,W

usedto measure anxiety. The STAr ha s been widely uuod to assess anxietyexp eri e n c e d by womenwhoha ve eithe rundergone or whoare abou t tound erg obreas tbio p si e s (Mi ll a r, aerIcIc, Bonke&.Asbu ry. 19 95; Scott,19B3; &.Suttonet at,19 9 51, The STA! consis ts of two-sub- s c alesof twenty items each . "fhe sta t e su b - e c eLe measures the current level of trans i t ory anxiety and has be e n shown to be sensitive to ed t.uatfonaJ The inst ruc tion s on the state sub-sc a l e ca n I~

modified tomea sure anxietyassoci ated with specific evo nt;a (Sp i elbe r g er, 19B3). For the purpo s e of this study , ttl~

instructionson theee ace sub -ecat ewe r e mo d i fi ed to moau u ro the anxiety that was being experience d si nc e the women h<.l,j re c eived not ific a tio n of their mammo gra m abnormaLi ty <'Jnd subse quently after they had received notifica t ion of thei r benign biopsy resul t. The trait sub-scal e of the 5TAL

30

measures the individuals'generallevelofanx i e t y . For each of these sub-scales, items are evaluatedusing a fou r-po i n t Likertscale.

Psycholog ica l Co n s e qu en ce s of Scre ening Mammography Questionnaire (PCQ) Revised. The PCQwa s developed by Cockburn, De Luise,Hurley&Clover (1992). Its intended use is to assess the effects of mammographyon thepa r t i c i pa nts ' emotional, social andphysicalfunctioning. Thi smeasure has been shown to have content , discriminant, concurrent and construct validity. Fu r t he r mo r e , the subscales hav e high internal consistency (emotional subscale; r".89; physical subscale, r ...77; social subscale, r=.78) (Cockburn et a I, 1992). Respcnaee are made using a Likertscale (0-3). This questionnaire was revised to examinethe ef f e c t s associated wi.t h receivi ngan abnormalmammogramand a subsequentbeni gn biopsy report (Appendix) .

Stru ctured In t ervi ews:

Stru c ture d Inte r view. All subjects we r e interviewed approximately one we e k prior to their scheduled biopsy procedure. The purpose of thisin t ervi ewwas to describethe subjects' reaction to their mammogram abn ormal i t y and to determinehowthe womeninterpreted and framed(I ha ve cancer, I do not ha ve cancer,

31

suspende d judgement) this

abnormality. The questionsemployed in this first inte r vi e w are contained intheAppendix.

A second interviewoccurred ap proximatel ysixweeksatter the wo me nwe r e notifiedof their biopsy report. Duetothis study's focus, onlywomen who receivedabenig n biopsyrepor-t participa te d in this second int e r v i e w. The questions administe re din this intervieware present ed in theAppendIx . Thesequestionswe r e designedto assesshow thewome n roecued toan d interpreted their biopsyreports.

2.4 Procedure:

Phase 1 (p r e-b iop s y). This study inc luded illl wo me n referredfor a brea stbiopsy following an ab n ormal nrammoqram at either of the hospitals during theperiodof Oc tober199';

to Ap r i l 1996. Womenwe r e invited to partic ipa te Ju thin study bythe surgical clinicstaff. Al l wo me nwe r e inf crmcd that a studywas be i ng conductedto examine the et tect. n 01 havi ng an abnormal mammogr am and subsequent breasL biopny. Women whowe re interested in partic ipa ting in thisstudymot.

withthe princi pa l investigator. The principal inve st tqotor then explained in greater detail the pu rpose 01:the stud y.

The wo me nwe r e informed that thepurpose of this study wanto examinethe effects of receiving a beni.gnbiopsyrenu.tt attc r havinganabnor mal ma mmogra m. Thewomenwe re.inf ormodthut; if they re ce i v ed a benignbiopsy repo rt, theywo u l d be anked La

32

lJ) l: .;, part in a second interview. Th e y were also told that they cculd decjLneto t.ake part in thissecond int e r vi e w if t.he ysodesired,

Con aent.L nq pa r t i c i p a n ts were re q u i r e d to signa standard conce nt form (Ap p endix) , Of the interviews that were cond uc t ed, 23 (79t) were conducted in the pre-admissions clinic and 6 (2I%) we re conductedinthe subjects' homes.

Prior to bi opsy, participants completed the state and then the tr ait Bub-sca le of the STAI . Spielberger (1 9 8 3) recommends this order of admini s trat ionwhen both sub s c a l es arc use d . The statesubscalewas designedto be sensitiveto the pres ent emo tiona l cl i mat e. In contrast, the trai t suo- scaleha s beenfoun d to be una f f ec t e d by the currentemotional c l imate. Giving the state-sub-scal e fir s t avoids the poss ibili ty that compl e t ionofthe trai t sub s ca le may alter the emotio nal climate and thus infl uence the subject's responseto thest ate subscaleLce ms. The instructionson the statesub -scalewere modif ied toas se s s the anxi etythat was be ing exp e r ien ce d after receivingnotif i c a t i on of amammog ra m abnormali t y. Participantsalsocompleted th e first sectionof the PCQ(re vi s ed ) . Afte r completi on of these two measures, pa rt i c ipa nt swe re interviewed by the investigator, en.ploy i ng thequestions ou tl i ne d in the Appendix. Thepurpose of this inter viewwa s to assessand describe howt.he women reacted to and int er p r e t e d theirmammogr a m report.

33

Pha s e2 (Po B t~biopBY). Thepurposeofthis studywas to as s e s s the relationsh ip be twe en the ini ti al fr aming of .l suspici ous mammogr a m and subsequent dist r e s s in women who receiveda falsepositive diagnos is. There f ore upon biopsy, womenwho were diagnosedas hav i ng cancerwere excluded [rom thisstudy . Womenwho received a benignbiopsyrepor-t were classified as receiving afalse positive diagnosis. '1'11,'.'1(' womenwe r e cont actedapproxamaceLysixwe ek s af terthey had been notifiedof theirbiopsyre port. sixto ei ghtwe eks han been shown to be the period duringwhi chan ac ute criei.u in usuallyresolved (Bl oom, 196 3 ; Lewis, Gotte sman Ii<Oust.cin, 197 9). The second phas e took placebetween 6·13 weeksa[L(!I' thesub j ect s hadbee nnotified of the i rbiopsy fi nd in gs. 't'hn meanti meperiod wa s 7we ek s .

Of the secon d intervie ws conducted, 18 (6?%) worc conductedintheSUb jec ts ' homes and 11 OS%) were ccnductcd at the Health SciencesCentre.

Dut"ing thissecondint erv i e w, womencomplet ed ther;tllt(' followe dby the trait sub-scale ofthe STAI. Theins t ructicnu on the state sub-acafe wer e again modified to ass ess the anxiet y the women we r e experie ncing si nce the y rec eived notification of theirbe n i gn biopsy report. Thefinalsection of the peQ(r ev i s ed) was also completedduring thisLnt.ervieu, Afterthecompletionofthe s e measures,pa r ticipantaw(, r'~

inte rvie wed by the investigator. The aimsof thin secon d 34

Ln uer vLew were : to desc ri be how the women re a c t ed totheir biopsy report, to determ i nehowtheyinterpretedthi s rep o r t , and to identifythelong-term psy c ho l ogic a lef f e c tsass o c i ated wi t h receiving afalseposit ive.

The items cont a ine d in bo t h the fi r st and second intervi e ws we r e pre-tested. Wi t h respe c t to the first intervie witems, thefirstfour subjects interviewedserve din the pilot test con dition . Th e women compl e t edthe interview and questionna ires. Based on thesesubjects' comme n t s, the instructions we r e modifi ed and ce r t ai n inte r vie w qu es ti on s were reworded. Onlyfour subj e cts served inthepilot test condi t i o nbecauseoncethesemod ific a t ionsweremade,noneof the rema in i ngsub j ectsexpe r i en c edanyma j or difficult ie s wi th either the intervie witemsor th e instru c tion s .

Twoof th esubj ect sin the pilo ting condition had masses that we re fou nd r.obemalignant up on biop sy. 'rhe remaini ng t.wo had be nign ma sse s . The two subjects who had beni gn mc secs , along wit h oneoth er su bject whohad a benignmass , serve d inthe pilotingcondi t ion for th esecond phaseof this st udy . The it e ms andin s t r uc tio n s pertainingto the second intervie w were piloted in th e same ma nn e r as previously ou t line d fo r thefir s t in terview. Only th r e e subjec ts were necessaryto remov eambigu itie s inthe interview it e ms. All SUbj ect s whoserv ed in the pilot test condi t ionwereex c l u d ed fro m fu r ther an al ysi s.

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2.5 Anal ysi s

All intervie ws we r e ta perecorded andlatertranscriood. The info rma t i o n cont a in edinthe inter vie ws wa sana1yacd to descri be and de ter mine howthe wo men initi a lly in terp re t e d the i rsus picious mammogram andtheirsubs eque n t beni g nb.lopn y report. Typi cal vie ws expre s s edbythe womenwe reextra ct ed fr omthe inte rv i ews and ar e introduc e d inthe tex t cf t.ho re s ult sse c t i o n .

The conte nt of the inte r vie ws was ana lyzed by two inde pe nden t raters . Based on this ana l ysi s, wome n we re cl ass if ied into one ofthethreeframi ngcategories prevlous l v ou tli ned. When categori zatio ncouldnot be agreed uponbythe two raters, th e int erview transcript s we r e givento<1thIt-d ra t e r who madethe final dec i s i on .

St a t i s tic al analys i s was perf orme d to determi ne khc relat ionship between framingand anxie tyleve l s forbothsl:udy phases uti li z inga seri es of sta ti st ica l tests, The mea n state and trai t anxietyscore swere als ocalcu lated (orbo t h studyphasesfor eachofthethr ee frami ngcateg ories .

Sta teand trai tanxietyscor e s we re calculated[or each subject . These scoreswe r e compared withthe age appropr iate normative meanfor each subje c t (Spie l berger,19 83) . Subj '.!cUJ whose scoreson either the sta te or tr aitsubscalewereone standard devi ation above the me an wer e c l eusLffed experiencinghighanxi e ty . Thi s proc edurewas conduct.ocrto

dn te r-mine if women who received an abnormal mammogram exper-Lencedhi g h e r levelsof anxietythan normal.

Aoneway analysisof variance was also employed utilizing the state anx let.y scores to determineif subjects classified in the th r e e framing categories differed with respect to anxiety levels. When th i s analysis was found to be significan t,a series of plan nedcomparisons were performedto determinewhere this difference occurred. This analysis was repeatedut ilizing the trait anxiety scores. This analysis was carried out for the datacollected during phase1.

Means and standard devi at i ons were calculated for the threesub-scalesofthe PCQ (revised).The proportion of women in each of the three fr a min g categories in agreementwitheach of thePCQ(revisedl items was also calculated. The purpose ofthi s calculat ionwas to determineif there was a difference in response pattern between the threeframingcategories. Chi square statistics were used to determine i f there wa s a si g n i f i ca n t difference. This analysis was carried out separately for both study phases.

Pa ired t·testswere utilizedto determineif there was a signif i cantdifference in anxiety levels between thetwo study phases.

Multivariateanalysisof variancewas used to determine i f there wa s an interaction between framing and anxiety levels. If the main effects were fo u nd to be statistically

37

signif icant an d no sig n ifi ca nt interaction effec ts wer-e observed.aseri e sof plannedcomparis o ns wou l dbeca rdedout to det ermine the full relat i on s hi p betwe en anx iety and fra ming.

3B

RESULTS 3.1 PHASE1 (PRE-B I OPSY) FINDINGS

J.1a Reac tionandframing of the mammogram abnorma l i ty. One of the aims behind the first interview was describe the subjects' reaction to their mammogram abnormality. Both the subjects' initial and present reaction to their mammogram abnormality was used to classify subjects as interpreting their mammogram abnormality as being indicativeof cancer, not indicative of cancer or suspending judgementregardingthei r cancer status.

Upon receiving the i r mammogram report, many eucf ecee initially felt a variety of emotions. Typical reactions to the mammogram findings included:

"1 was panicky, a bit, you know what I mean, not outside, but you'resitting there and everything is going through your mind.

"I couldn'tthink ... the first thing that comes to your mind is cancer, lumps ...whatever ...and people tha t you knowthat have died and that have cancer."

"May be. may be, there is a chance it may be cancerous, but I am trying not tojump the gun."

"Urn...! was a littlebitwo r r i e d , not too worried."

39

Common reactionsto the mammogram find i ngs ar epresen ted in Table 2. In general,thesecomme nt s were indica t iveof anxiety.

InsertTable 2 Here

In addition to their in it ia l though t s, subjects w~'rc askedwhat theyth o ught aboutt.heirmameoqr-amatthispointill time. Sometypicalresponses to this quest i on incl ud ed the fo llo win g ,

"Right now I ama littlemoreopt i mi st i c aboutit. !;lm hoping that itisgoing to turn out okay . Juavo been told that90t or90plus perce nt ofth e searc beniqnno I am a l i ttle optimist i c , but yet a lit t le.

little.. .ah tomented abou t it so. "

'Well,to tell youthe truth, atthetime I thoughL..it was a cystbecause Iwasaf terhavi ng onethe re be[or e.

I twas thesametyp e , but the nitstartedgetting La rq er- andI said...(pau s e). .itcouldbe anyth ing . Whoknmm what it couldbe!"

Based on theirre eponsea toth eseince rvtewque sui on n, subjectswe reclassifi ed aseither percei v in gthems elv esan having breast cancer, not having breastca n ce r , orsuependinq

judgement on the presence or absence of breast can cer. The inter-rater agreement was 83%'. The number of subjects c Laa eLfied into each of these categories is presented in Table 3.

Ins ertTable 3 Here

As can be seen from TableJ, 60% of the SUbjectswe r e cl a s s i f ied as suspending judgement on thei r cancer status.

Less than one half of the sample we r e classified as firmly interpreting their mammogram abnormality as being either indicative or not indicativeof cancer.

The minority of sub jectswho felt that they either had or did not have breast cancer were more firm in their responses tothe questions asked duringthe first interview thanwome n whowereclassified as suspending judgement. For example one subject who was classified as in t e r p r e t i ng her mammogram abnormality as not being cancerous said:

" Well, I feel, right now, that there is no need ..:.0 worry. That I am almost sure that ifthe r e is something there it is benign and not malignant."

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Similarly,an othersubject classi f iedas in t e r p r e t i ngher mall'aQ09r amabnormality as notbeing indica t i v e ofcanc el- said:

II I'm not wo r r iedabout the cancer bit at all! 1 don't think thereis any ca nc e r there, I'dbeso me shocked i ( therewas. "

A subject classified as perceiving herself as having canc e r sa id :

"... you sit in thebath and everyt h ing isqu lnt, andyou lie ba c k and think, is this my lost yea r ...itu fri g ht e n i n g, ..cbere are so many pe ople dyjIIg of cancer ...if i tisso curable, vne reare all the s epe o p le going?"

In contrast , subj ectswho wereclassifiedas aua pe ndiuq ju dge men t. communicatedduring the interviewth a t thp.ywer-e optimistic , or hoping th a t i t was not can ce rou s, They ....err.

less sure of their feelings than SUb j e c ts in the other two cate go ries. Typical responses made by su bj ect s who Wf~rp.

cLaas LfLed as suspending judgementincluded:

"I'm sti l l ali t tlewo r ri edabout it,becaus e , really , hr~

(th e surge on) won't know fo r sure until he ooce thn biops y ."

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·.there is a difference between what your brain thinks and what your stomach thinks, and so part of me worries (about cancer) and t.heintellectual part of me says that I shouldn't worry."

"r have mixed emotions. Very much so, because until the

doctor tells me its okay I won't be content."

"I've beenabit, . .what? .. ambivalent, Iguess. I have been kind of up and down and back and forth a number of times about i t. I know the statistics are very good, in my favour. And uh there are really a lot of positive thingsabout it. But until you get it all done, and copper fastened and someone saying, "you'refi n e " , there is that.. . nag, so ...Idon't know, Iguess (pause) Iguess Iam somewhat worried, but withall kinds of reasons not to be. So I think it more my sub-conscious than anything. "

All subjects regarded the biopsy as the means to determine once and for all if the lump was malignant benign. fls one subject put it:

"I am having the biopsy done because if I don't go through with it, it will always be sifting through my mind..."

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3.1 b The relation e.h ip betweenframingandanx i ety LeveIe, The sta t e and tra i t an xiet y score s were calculated tor ea c h subject . Bothth e st ate and the trait sc o r e s [01'each sub ject we r e compared wi th the i r ag e app r-o pri arc no rnnr (S pie l be r g e r, 19 83) . Subj e ctswe r e classifiedasexperiencing hig h anxietyi ftheirsc or eswe r e on esta n darddevi a t ionabove th e irageapprop r ia t e mean. The data for stateanxLety iln~

prese nted inTab l e 4 by frami ng ca tegory.

In s e r t Tabl e4He r e

As can be seen fr om Tab l e 4, 72.4% of the nampl n exper iencedhigher tha n aver age leve ls of an xiety . 'I'lli[]

fin di ngle n ds support to the hypo the s i s thatpri or to biops y , women who re c e ive an abnormal mammogra m experIencc .1 heighten ed leve l ofanxie ty.

All subject s cl assifi ed as perc e iving thcms eLvc n an havingca n c e r and 77 . 8\ of subj e c ts who we re classif ied il:1 suspending judg e me nt hadlev e lsof anx i et ytha t we r e hi gher thanthe i r age appropriate norms. Incon t r as t . onl yone ha lf of the subjects classifi ed as perceivingthemselves an no t having br e ast cancer exp e ri ence d <1 heighte ned ] eve! o[

anxiety .