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Womens ttitudes to Screening fterParticipation in the National BreastScree~ ing tudyA Questionnaire SurveyCornelia J. Baines, MD,* Teresa To, PhD,tand Claus Wall, MSct

A self-administered questionnaire study exploring womens atti tudes to breastscreening after participation i n the Canadian National Breast Screening Study(NBSS) achieved an 82 response rate. Of active respondents (AR) attending two tofive screening examinations, 1582 had received annual mammography (MA) andphysical examination (PE) of the breasts and 548 received annual PE alone. Of 139dropouts after the first screening, 105 received MA and PE and 34 received PEalone. Dropout respondents (DR) were significantly less likely than AR to repor treceiving very prompt (46 versus 66 ), very courteous (73 versus 92 ), or verycompetent examinations (74 versus 95 ). Although 35 of those allocated to PEexpressed disappointment wi th PE allocation compared with 9 of those allocatedto MA, fewer of those allocated PE were prepared to accept MA in the future thanthose allocated MA (59 versus 73 ). Of those who had MA, 36 reportedmoderate and 9 extreme discomfort from mammography. Almost half of eachsubgroup--MA allocations, PE allocations, and DR-preferred mammography every2 to 3 years and 30 preferred mammography restricted to diagnostic purposes.Only 5 of AR reported anxiety after screening. National Breast Screening Studyparticipation was a positive experience for 93 . An intention to do breast self-examination (BSE) was reported by 89 of AR and 79 of DR. Forgetfulness was amajor impediment to BSE. Disincentives for screening were excessive distance tocenter, painful mammography, fear of radiation, lack of time, and preference forown physician. Convenient location, punctual appointments, and courteous andsupportive staff should enhance screening compliance. Cancer 65:1663-1669,1990.

ECAIJSE there is such widespread interest in massB creening for the early detection of breast cancer, aquestionnaire survey of women who had completed theirscreening program in the Canadian National BreastScreening Study (NBSS) was implemented. Their re-sponses were expected to be useful in enhancing under-

standing of womens perception of participation in a re-petitive screening program. Furthermore, it would bepossible to explore the respondents attitudes with respectto continued screening in the community. In particular,questions could be asked about mammography, physicalexamination, and breast self-examination (MA, PE, andBSE, respectively.)

From the National Cancer Institute of Canada Epidemiology Unit,Supported by the National Cancer Institute of Canada.* Associate Professor, Department of Preventive Medicine and Bio-statistics, Uriiversity of Toronto, Canada, and Deputy Director, NationalBreast Screening Study.t Assistant Professor, Department of Preventive Medicine and Bio-

statistics, University of Toronto, Canada, and Biostatistician, NationalBreast Screening Study.

University o f Toronto, Toronto, Canada.

f Data Manager, National Breast Screening Study.

The authors thank Messrs A. White and P. St. Louis for programmingassistance, E. McMullen for conscientious and dedicated coding, Drs.G H. Howe and A. B. Miller for advice, and the respondents for theircooperation. Drs. R . Senie and J. Howard provided useful criticism ofthe questionnaire in its early stages.Address for reprints: CorneliaJ. Baines, MD, Department of PreventiveMedicine and Biostatistics, 12 Queens Park Crescent West, TorontoMSS 1A8. Canada.Accepted for publication August 4 1989.

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1664 CANCER pril 1990 Vol. 65Methods

SampleWomen who had attended the NBSS centers at the To-

ronto Mt. Sinai Hospital or the Winnipeg Manitoba Can-cer Treatment and Research Foundation were eligible toreceive a questionnaire once their assigned screeningschedule had been completed-in some cases3 years andin others 4 years. Women known to have breast cancerwere excluded. Eligible women were randomly selected,to produce a stratified sample according to allocation (MAplus PE versus PE of the breast alone), age at entry (40to 49 years and 50 to 59 years), compliance (good [atten-dance at four or five of five possible screens or three orfour of four possible screens] versus poor [attendance attwo or three of five possible screens or two of four possiblescreens]), and, finally, according to the consequences ofscreening that are displayed in Table 1 along with thenumber of respondents in each cell. Abnormal screens,clinical or mammographic, resulted in a referral to theNBSS review clinic, where an NBSS surgeon would decidewhether &agnostic interventions should be recommendedto the womans physician. Table 1 shows that stratificationwas by no referral to review, referral to review but norecommendations made, referral to review followed by aperformed fluid aspiration, and referral to review followedby a performed open biopsy. Originally it was intendedthat 150 women would be selected for each cell, but thepopulations of the two centers did not provide sufficientnumbers of poor compliers who had abnormal screens,as revealed by the denominators in Table 1.

Another group of women who received the question-naire included all those who had dropped out of the NBSSafter one visit. These women will be referred to as dropoutrespondents (DR), whereas all other respondents will bereferred to as active respondents (AR) because they ac-tively participated in screening.Questionnaire

The questionnaire offered 36 questions (37 for DR)and was mailed to 2800 women with a letter of expla-nation and a self-addressed, stamped return envelope. A1985 pilot study on 50 women had demonstrated thequestionnaire to be highly acceptable, with a 94 responserate, and also permitted clarification of text. Mailing beganin 1986 and continued through 1987 as women completedtheir screening schedules. As many as two reminder letterswere sent to 805 nonresponders; there were 94 bad ad-dresses, and two women had died. Ultimately, there were2299 questionnaires to be analyzed, for an overall responserate of 82.1 (88 for 1823 good compliers, 76 for 721poor compliers, and 54 for 256 DR).

To estimate the reliability of the responses, agreementwas analyzed for 68 women who submitted two ques-tionnaires. The mean interval between receipt of thesequestionnaires at the coordinating center was 8.6 months(low, 1.7; high, 16.5 months). Overall, there was 85.3%agreement. Poorest agreement (59 )was achieved for thequestion on the extent to which mammography was un-comfortable. In this analysis disagreement was said to haveoccurred if the first response was very interested andthe second moderately interested.

nalysisWomens responses to the questions were tabulated ac-

cording to age, compliance, and allocation, and, whereappropriate, tests of significance were applied with the useof a t test for independent samples2 Log-linear modelingwas used to determine the simultaneous effect of all vari-ables on responses to questions. The chi-square goodness-of-fit test was used in evaluating the significance of thelog-linear modeL3

ResultsSources of wareness of NBSS Before Entry

The first question reiterated one that had appeared ona questionnaire presented at entry into the NBSS askingwomen to identify how they had become aware of theNBSS. For AR the sources of awareness reported werefriends (32.2961, physicians (6.3 ), newspapers or maga-zines (33.4 ), elevision or radio (20.8 ),personal lettersof invitation (12.5 ), or information received at work( 1 1.8 ). The frequency distribution of reported sourcesfor AR paralleled the distribution reported by all NBSSparticipant^.^ Only one subgroup comparison yielded sig-nificant differences. Poor compliers were more likely toreport receiving a letter of personal invitation than weregood compliers (22.8 versus 9.1 , P 0.002). Dropoutsrevealed the same frequency of letters being a source ofawareness as did the good compliers.Factors Influencing Entry in the NBSS

Factors encouraging entry into the NBSS included thedesire to have a mammogram (23.0 ), a positive attitudeto research (62.5 ), and a wish for BSE instruction(42.6 ). Factors delaying entry into the NBSS includeddistance and traveling time to center (5.2 ), fear of phy-sician disapproval (0.8 ),being too busy (6.1 ),and fearof being examined by a stranger (0.5 ). Fear of findingout they had breast cancer was reported by 11.2 , butwhether this had a positive or negative impact on entryinto the NBSS is not known.

Here subgroup analysis yielded a major difference be-


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No. 7 WOMENSATTITUDES O SCREENING Baines et al. 1665TABLE . Distribution of Respondents: Ratio of Respondents to Questionnaires Mailed

Allocation Mammography No mammography*Compliance Compliance Compliance(aged 40-49 yr) (aged 50-59 yr) (aged 50-59 yr)

Good Poor Dropouts Good Poor Dropouts Good Poor Dropouts TotalNo review 2061231 187/247 48/87 1651176 1291165 41/73 153/175 1521191 30156 1111/14 01Review and norecommendations 1531175 29/41 6/13 177/197 11/13 6/1 0 1621184 13/17 414 56 11654Biopsy done 1801219 11 /21 113 160/177 7/15 215 65/76 314 o/o 4291520Fluid aspiration done 1321149 315 I 14 30131 212 o/ 2913 1 112 1 1981225Total 611/774 2301314 %/I07 5321581 1491195 49/89 4091466 1691214 34/60 229912800

* Women aged 40 to 49 who were allocated to group having no mam-

tween MA allocations and PE allocations, with 26.7 ofthe former saying they had wanted mammography, com-pared with 12.8 of the latter (P 0.008). If MA allo-cations were broken down by age, 29.4 of women ages40 to 49 on entry into the study reported they had wantedmammography compared with 24.1 of women ages 50to 59. Finally, DR were significantly more likely to citedistance from the screening center as a factor comparedwith all Ali, at 27.1 versus 5.2 (P 0.0002).Th e Screening Center

Overall, 66.4 of AR reported that their screening ex-aminations had proceeded very promptly and another33.0 quite promptly. Similarly, 9 1.8 reported centerstaff to be very courteous and 7.6 to be quite cour-teous. Dropouts were less likely to report that centerstaff memlbers were very prompt (46.4 , P 0.0008)and very courteous (70.0 , P < 0.0001).MA allocatedwomen were less likely to report that staff members werevery courteous compared with PE allocations (90.8versus 94.8 , P 0.005), as were poor compliers com-pared with good compliers (88.7 versus 92.9 , P0.0009).

Th e Screening Exam inerA very competent PE was reported by 95.4 of ARand a moderately competent examination by 4.3 withonly one person reporting not at all competent. Verycourteouswas reported by 9 1.8 and moderately cour-teous by another 4.1 . Dropouts were significantly lesslikely than AR to report either: 73.6 for very compe-tent (P


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No. 7 WOMENS TTITUDESO SCREENING Baines t af 1667whether they planned to request PE in the future: 60.4said yes, 13.9 said no, and the remainder were uncertain.As for mammography, 49.5 of all AR said their physi-cians had never ordered a mammogram, 16.0 had hada baseline mammogram, 7.0 had had several physician-ordered mammograms, 8.8 believed their physicians in-tended to order mammograms in the future but 33.5reported their physicians would not be ordering anymammograms. There were no substantial differences be-tween subgroups.Attitudes to Research

Approval of research trials such as the NBSS was ex-pressed by 98.1% of AR. Only six women from the entiregroup, including DR, expressed disapproval. Forty-threewomen neither approved nor disapproved.General Com ments

The questionnaire concluded with two open-endedquestions. All recipients were asked Do you have anyfurther cclmments? and DR were additionally askedWhy did you drop out of the study? Of the 2 160 AR,55.7 made at least one comment and 6.4 made fiveor more comments. In all, 2828 comments were codedinto 73 categories. Gratitude was expressed by 33.0 ofcommenters, and compliments were paid to the NBSS by47.8 . Continuation of the study was deemed desirableby 25.2 , and 7.7 expressed regrets that the study wasover for them. Participation was a good experience ac-cording to 20.3 . Other responses included commentsthat PE of the breasts done in the NBSS was better thanthat done by their physicians (4.6 ), health insuranceshould cover all costs of screening (7.6 ),screening shouldbegin before 40 years of age (4.0 ), and mammographyis reassuring (4.5 ); mention was also made of fear ofbreast cancer (4.1 ), family history of breast cancer(7.6 ), concern about radiation (6.2 ), appreciation ofBSE component of NBSS program (7.6 ),and willingnessto volunteer for additional research (4.3 ). Only 5.7offered negative criticism of the NBSS, including that di-rected at nurses, surgeons, radiographers, and the protocol.Comments were also made by 56 of 139 DR, with48.2 of the commenters expressing thanks or goodwishes to the NBSS, whereas criticism of any kind wasexpressed by 16.1 .The question addressed solely to the DR, asking thereasons fcir their not continuing in the study, elicited an-swers from 133 (95.0 ), with 63 women offering two ormore comments. Their explanations included the follow-ing: excessive distance to the screening center, 32.3 ;mammography too painful, 22.5 ; fear of radiation,15.0 ; ack of time, 12.0 ;preference for own physician,

9.8 ; other health problems, 9.0 ; did not want MA,7.5 ; physician objected to NBSS, 6.8 ; media contro-versy regarding MA and screening, 6.8 ; family problems,5.3 ; PE hurts or is embarrassing, 4.5 ; inflexible ap-pointment procedures, 3.8 ; and criticism of radiogra-pher, 3.8 .Two women believed BSE was sufficient for screening,two said they did not like being guinea pigs in research,two resented biopsies performed as a consequence of false-positive screenings, three said the costs of transportationand/or missed work were too high, one wanted MA andwas allocated to PE, and one dropped out because shewould reject mastectomy if breast cancer were found.The sample was stratified according to review status(Table 1) because it was expected that women who hadnot experienced the stress of a review visit with or withoutsubsequent diagnostic interventions might be more fa-vorably disposed to screening than women who had beenreviewed or had had unnecessary biopsies. Not allquestions would have been affected by review status. Thefive questions considered most likely to be affected con-cerned anxiety induced by screening, the quality of theNBSS experience, willingness to accept breast examina-tions and annual mammography, and intention to per-form BSE in the future. Because the data are categoric,log-linear modeling was appropriate to determine whetherreview status was associated with attitudes to the NBSS,screening in general, and BSE, while adjusting for otherfactors such as age, allocation, and compliance. The resultsrevealed that responses to the five questions were not sig-nificantly different among review status strata.

DiscussionA clear picture emerges of women who attended breastscreening programs in two Canadian cities: the vast ma-jority of them were positively disposed to the NBSS,screening, BSE, and research. A clear picture also emergesof women who dropped out: although half of them vol-unteered expressions of thanks or goodwill to the NBSS,compared with all the other respondents they were more

likely to complain about pain from mammography, beless interested in BSE, and be less interested in screening.Dropouts were also more likely to report that distancefrom the screening center was a problem and they werealso less likely to have experienced competence, courtesy,or promptness during screening. Much less support fromfamily, friends, and physicians was reported by DR andpoor compliers.What the respondents had to say about mammography,PE, and BSE may provide helpful insights for the imple-mentation of future screening programs.In light of the massive promotion of screening with


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Vol. 6668 CANCER pril 1 1990mammography in recent years, it is surprising that suchlarge proportions of women express a preference for di-agnostic mammography over screening mammographyor for mammography every 2 or 3 years instead of an-nually. However, they appear ready to be persuaded toaccept annual mammography, even if they prefer other-wise. It is also surprising that 50 of AR said their phy-sicians had never ordered a mammogram and that 33believe their physicians will not order a mammogram inthe future.

Women allocated to mammography were slightly lesslikely to report courtesy and promptness during screening.This observation underlines the importance of carefulscheduling of mammography (which cannot always beachieved when breakdowns occur) and the importance ofthe relationship between the patient and the radiographer.Some respondents specifically criticized the radiographersfor coldness, terseness, lack of gentleness, and automaticbehavior, revealing that a warm and empathetic approachis necessary for women intimidated by the physical andpsychologic experience of submitting to mammography.

In contrast to a previous survey of mammography inwhich only 9 of women reported moderate discomfortand 1% pain,5 our respondents clearly indicated thatmoderate discomfort is not rare because it was experiencedby more than a third of women and extreme discomfortoccurred in 9 . If excellent rapport is not established, thisdiscomfort will, in at least some women, serve as a dis-incentive to return for routine screening.

Despite problems associated with mammography,women seemed to become more accepting of it if theyreceived it. This is revealed in comparisons of the MAand PE allocations. Diagnostic mammography was pre-ferred over screening mammography by 42.2 of PE al-located women and only 25.1 of MA allocated women(23.5 of women age 40 to 49 years and 27.5 ofwomenage 50 to 59). Annual mammography was acceptable to73.2 of MA allocated women and only 59.2 of PEallocated women. Willingness to pay for MA was ex-pressed by 71.3 of MA allocated women and only 63.3of PE allocated women. Although 34.4 of PE allocatedwomen were disappointed with their allocation, only 9.4of MA allocated women were disappointed with theirs.

Nevertheless, the responses altogether point to an un-derlying ambivalence in some women about mammog-raphy. They may want the benefits of mammography,but they often dislike the procedure, are concerned aboutradiation, or resent unnecessary biopsies. Successful im-plementation of mass screening programs will require notonly making available the appropriate technology, butalso delivering it in a humane manner that will reassurewomen and offer them minimum inconvenience.

Physical examination caused much less discomfort than

MA and seems to have been more acceptable. Althoughonly 69.3 of AR said they would accept annual MA,93.8 said they would accept annual PE. Only one womanin five preferred physicians to nurses as examiners. Femaleexaminers were preferred by 39.9 , and 58.7 said theyhad no preference. Thus, nurses seem acceptable to a greatmajority of women, and almost 98 would accept femaleexaminers. If our respondents are at all representative ofwomen who would accept screening, it seems that screen-ing programs that include PE of the breast could havethis component delivered by nurse-examiners as occurredin 12 of 15 NBSS screening centers. (Physician-examinerswere used in the three NBSS centers located in the prov-ince of Quebec.)

A very positive attitude to BSE existed, with 89.3 ofAR saying they intended to do BSE and 79.3 of DRexpressing similar intentions. It is astonishing that, amongwomen who could have attended up to five screening visitsand who had been taught BSE up to five times, 52.7still said it was difficult to get themselves to do BSE. Only7.3 considered their BSE technique to be excellent com-pared with 49 rating their ability as adequate or poor.The impediments to BSE were familiar: laziness, forget-fulness, being too busy, and lack of confidence in skillsand interpretation. It has already been shown6 hat NBSSparticipants improved their BSE frequency and BSEcompetence with annual BSE instruction over the courseof three screening examinations. However, the currentstudy reveals that, even after additional instruction, BSEpractice, in women with positive BSE attitudes, is notsimple and is neither effortlessly nor confidently achieved.From this, one could equally well draw two conclusions.First-that if compliant women who are repetitively in-structed in BSE still report obstacles to practice and limitedconfidence in their skill-BSE promotion should be dis-couraged. Second-that if BSE is promoted, little is likelyto be accomplished with a single episode of instructionof whatever kind-feedback mechanisms are required.

The final two open-ended questions yielded commentsof extraordinary richness to an extent that detailed codingcould not capture them. Women were surprisingly openabout screening and its impact on their sexuality:Although the mammogram was only mildly uncom-

fortable, my breasts were tender for 48 hours after theexamination. It made me hesitant to be a lover. Mywonderful husband understood, so it wasnt a problem,but could it be for others?

As a result of the NBSS Ive had four biopsies. Eachtime the results were, thank heavens, negative, but bythe end my husband and I began to wonder whetherthe effort was worthwhile. Before the biopsies, mybreasts were receptive to sexual foreplay. Even now,some two and a half years after the last biopsy, my


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No. 7 WOMENS TTITUDES TO SCREENING Baines t al. 1669breasts are more apt to hurt than react positively. Iregret the change. Perhaps in t he futu re it will be pos-sible to be m ore selective a bo ut which suspicious spotsare really suspicious.

Altruism was a motivating factor for many women, forexample:

Although I needed a push from my daughters to getinto the program, I am very glad I was able to con-tribut e iin a small way to research a nd hop e it will provebeneficiial to future generations. I would l ike to addmy narne to a mailing list if you find it necessary tosolicit extra funds t o carry o n furth er studies.

I travelled 130miles each way to the screening centerto take part. N o distance is too great when i t comes tohealth and further study to provide us all with betterhealth.

One woman in particular made vivid a plea for a sup-portive screening environment:

I had a trapped feeling just when having the mam-mogram. I found this part cold and degrading for som ereason--big room-cold techn ician behin d th epanel-an all alo ne feeling. I said to m yself to hellwith this A nice smile might have helped, or somesoothing music, even a cup of tea. It was almost afeeling of being on a torture rack. It was not t hat p ainfulbut I did not like it.

Women were not reluctant to talk about physicians.One woman with cystic breast disease who had soughtassessment before entry into the NBSS claimed the fol-lowing:

I received som e pretty shady medical care with insin-uation s I was looking for attention .

Another wrote the following:I feel that most doctors for a variety of reasons givesuch a hurried, sketchy 30 second breast examinationthey would miss a lu mp the size of a golf ball.

One woman wrote a somewhat kinder comment:Wh en I f irst mentioned to my d octor that I had signedup for the NBSS, she seemed very indifferent. By thetim e it was over she had a chan ged attitude-she ac-tually respected th e nurse-examiners findings over herown as she was usually rushed.

Finally:Although my ow n doctor approved of the NBSS, thesurgeon wh o did the biopsies did not-he called it thatdam ned fool thing. I almost thought t hat he feltthreatened or that his territory was being invaded. Per-haps he was just grumpy.

Analysis of these 2299 postscreening questionnairesbrings home the extent to which the NBSS depended onthe cooperation, commitment, and efforts of all 90,000participants. Theirs was not a trivial contribution. Partic-ipation impinged on their time, well-being, and relation-ships with family, friends, the workplace, and physicians.The costs of participation were not only psychological butalso, despite the screening examinations being free, mon-etary. Tribute should be paid to all participants, and oneform it could take would be for everyone advocatingscreening to heed the messages these women provide.

REFERENCESI . Miller AB, Howe GR, Wall C. The national study of breast cancerscreening. Clin Invest M ed 1981; 4:227-258.2. Snedecor GW, Cochran WG. The binomial distribution. In: Sne-decor GW, Cochran WG, eds. Statistical Methods. ed. 7. Ames: Iowa

State University Press, 1980; 124-128.3. Fienberg SE. Four- and higher-dimensional ontingency tables. In:Fienberg SE, ed. The Analysis of Cross-Classified Categorical Data.Cambridge: Massachusetts Institute of Technology Press, 1978; 59-76.4. Baines CJ, Christen A , Simard A et al. The Na tional Breast Screen-ing Study: Pre-recruitment sources of participant awareness. Can J PublicHealth 1989; 80:221-225.5. Stornper PC, K opans DB, Sadowsky NL et al s mammographypainful: A multicenter patient survey.Arch Intern Med 1988; 148:521-524.6. Baines CJ, Wall C, Risch HA, Kuin JK, Fan IF. Changes in breastself examination behavior in a cohort of 82 14 wom en in the CanadianNational Breast Screening Study. Cancer 1986; 57: 1209-1216.

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