Delay versus help seeking for breast cancer symptoms: A critical review of the literature on patient and provider delay

Sot. Sci. Med. Vol. 36, No. 12, pp. 1521-1534, 1993 Printed in Great Britain. All rights reserved

0277-9536/93 $6.00 + 0.00 Copyright c; 1993 Pergamon Press Ltd

DELAY VERSUS HELP SEEKING FOR BREAST CANCER SYMPTOMS: A CRITICAL REVIEW OF THE LITERATURE ON PATIENT AND PROVIDER DELAY NOREEN C. FACIONE

Department of Physiological Nursing, San Francisco,

61 IY, School of Nursing Building, University San Francisco, CA 94143, U.S.A.

of California,

Abstract-Patient delay in seeking help for breast cancer symptoms and provider delay in treating those symptoms combine to decrease a woman’s potential for breast cancer survival. This paper reviews the literature on patient and provider delay published since 1975. Meta-analysis of 12 studies using common definitions of patient delay estimates that 34% of women with breast cancer symptoms delay help seeking for 3 or more months. Provider delay appears to be both under researched and underestimated. This review identifies the factors that have been advanced as contributing to patient and provider delay, evaluating the support for each of these reported findings. Theory-based hypotheses emerging from the reviewed studies highlight foci for future investigations. Key wsords-breast cancer, survival, access to care

delay, denial, lagtime,

help seeking, symptom

INTRODUCTION Untreated, a malignant breast tumor advances in stage, diminishing a woman’s chances of survival. Determining the factors which contribute to delays in treatment has been the continued focus of cancer researchers throughout the world [l-9]. The incidence of breast cancer continues to rise, with the United States expecting 180,000 new cases and 46,000 deaths in 1992. England and Wales currently lead in age adjusted death rate (29.3 per lOO,OOO), followed closely by the United States (22.4) and other European nations. In light of the clearly established relationship between early case-finding and survival, understanding the factors that determine the timing of treatment remains of paramount importance in the effort to decrease breast cancer mortality. This review is divided into four sections: (I) the definition of delay, its prevalence and its impact on survival; (2) contextual variables suggested as predictive of the timing of seeking professional evaluation and treatment (help seeking) for discovered breast cancer related symptoms as well as for the timing of initiating treatment; (3) demographic variables targeting populations where delay is most observable; and (4) foci for future research and methodological considerations. Theoretical connections will be highlighted to facilitate their testing in future research. This paper synthesizes research studies from I1 nations published in English language journals during the years 1975-1992. The focus of the review is the phenomenon patient and provider delay in treatment for breast cancer symptoms. The reported findings are for female cancer of the breast, no studies having reported on the less than I % of breast cancer occurring in males. The studies currently under re-

duration,

symptom

attribution,

view were located through a bibliographic citation list generated by the Melvyl Medline. Reference lists from all of the located studies were, in turn. used to trace other studies published since 1975. HOW COMMON IS DELAY AND WHAT ARE THE IMPLICATIONS FOR SURVIVAL OF BREAST CANCER?

Patient delay Echoing the thoughts of cancer clinicians the world over, Solzhenitsyn writes these words for the ward physician Ludmilla Afanasyevna: “You neglected yourself. Why didn’t you come earlier? Why come here when you were practically a corpse?” [ 1I]. Why, indeed? The prevention of delay in the diagnosis and treatment of all forms of cancer has been vigorously pursued since the early 1930s. Pack and Gallo [12] defined “undue patient delay” arbitrarily as “three months or more elapsed time between discovery of symptoms and a visit to a physician.” Researcher investigators in the current group of studies, rather than judge the appropriateness of delay, have described its prevalence. The Pack and Gallo [ 121 paper proved influential to subsequent research on patient delay, resulting in a collection of studies which have reported the percentages of patients who delay help seeking for 3 months or more from discovery of symptom until consulting a health care provider. Overall, however, operational definitions of delay remain largely arbitrary. Although one study defined delay as “two weeks or more” [13], most report in categorical blocks by months and others describe continuums ranging from days to years. All studies mark the beginning of the patient delay period from the self-discovery of symptoms, but endpoints of the period vary from first provider consultation, to

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biopsy, to diagnosis, to first treatment. Many of these definitions unfortunately confound patient delay with time spent within the provider venue. Recognizing that patients may indeed contribute to delays that occur after provider consultation, for the purposes of discussing reported findings on patient delay in this review. the time period that will be used is fhe time ,fiwm self-discovery qf‘a breast s~~mptorn to the time a woman seeks ewluation of’ the symptom by a health CNW prooider. Admittedly, the use of retrospective recall data to determine the commencement of the patient delay period carries its own potential validity threat. Symptomatic women might wrongly estimate or even deliberately misrepresent symptom duration. Random sample selection defends against deliberate misrepresentation in quasi-experimental designs, theoretically distributing such individuals evenly among sample groupings, but the threat to validity remains in descriptive studies. Many investigators, however, have observed that women mark the timing and exact circumstances of breast symptom discovery quite carefully [7, 23-251.

form of misdiagnosis or false reassurance that the lesion was benign, and resulted in treatment delay. often to the point were the cancers were termed “not survivable.” No recent studies located for review focus primarily on the time period beginning fi~)m CI womut~‘.~ seeking an evaluation of u st,ls-tli.rcor.c,red hreust symptom and ending ut initicltion of’ wtw[rnvn[, the period this review will term prorider deluxe. Several studies did offer observations on provider delay [I, 5, 6, 13-211. The consensus suggestion of these studies was that provider delay is significant [I, 13, 16-18.21. 221, has been underestimated [ 13, 20,231, and warrants further study. Information from these investigations will be integrated into the remainder of this review. What percentage of women. diagnosed with breast cancer, delay seeking help for their symptoms? Varying definitions of delay limit possible meta-analysis. But, I2 of the current studies under review defined patient delay as given above. studied women with confirmed breast cancer. and reported percentages of women who delayed for three months or longer. Using only these I2 studies. a frequency weighted average can be calculated, equalizing the influences of differing sample sizes. Table 1 lists the studies used for this calculation. The frequency weighted average. calculated with a total sample of 8781 breast cancer women, provides the estimate that 34.2% of breast cancer women are symptomatic for three months or more before seeking provider help. Might this percentage differ significantly across nations? A different frequency weighted average can be calculated for the 7 U.S.A. studies (34.5%. total N = 7854) in comparison to the 3 studies from Great

Pack and Gallo [ 121 also declared one month as “adequate time for the physician to take appropriate action. ” implying that this standard was typically met by physicians. and pointing out that additional delays after physician consultation were often the fault of the patient not following advice. Rather than completely ignore any provider component to undue delay, they did report that approximately 15%, of their sample patients had received “poor advice” from their physicians. The “poor advice” took the

Table I. Meta-analysis

of patient delay of 3 months in the presentation professional evaluation and treatment

Author and reference

Year published

Denms. Gardner and Lim [16] (U.S.A.) Wilkinson PI ul. [26] (U.S.4.) 4dam t’l a/. [ 131 (Great Britain) Nichols PI II/. [2l] (Great Britain) MacArthur and Smith (Great Britam) Huguley and Brown [I81 (L:.S.A.) \‘ernon <‘I ol. 1271

of breast cancer \)mptom\

SamDIe (N’)

% of women re”orted as delaying 3 month?

3 month\ dclub or more (k 1

1975

237

4x 0

II-I

(U.S.A.)

I988

I89

(U.S.A.) Freeman and Wastie [30] (U.S.A )

19x9

193

56.0

IOX

Mor

1990

29X

32.0

95

I990

I89

35 5

67

1992

359

39.x

II(1

Samet

cI ul. 1721

CI II/. [9]

(U.S.A.) Rossi er rrl. [5] (Rome) Menon.

Teh

and Chua

[I]

(Singapore)

Total N = 8781 Overall

relative

frequency

Ii11

of 3 months

delay = 34.2%.

Total d&vine ,

L

3 months = 3005

Breast symptoms

and delay: a critical review

Britain (23.7%, total N = 379). Such a coarse comparison should not be over-interpreted, however, since this apparent difference in delay percentages by nation does not reach statistical significance by independent T-test. Small numbers of studies from other nations, as well as differing definitions of patient delay, prevent further comparisons; but the question of a differing magnitude of delay in different parts of the world warrants continued monitoring. The need for earlier case-finding can be more concretely visualized by applying the U.S.A. estimate of 34.5% to the expected new breast cancer cases for 1992. Approximatel_v 62,000 American women diagnosed with breast cancer in 1992 will have had symptoms for 3 months or more before seeking proCder evaluation. This statistic underscores the importance of research to identify factors influencing this delay. Delay’s infiuence on surtkal Both patient and provider delay have direct implications for survival of breast cancer. Sixteen studies in this review analyzed symptom duration in relation to 5 and/or IO year survival, and all concluded that delay was significantly related to decreased survival [3-6,14,15,19,22,25-321. Although the impact of delay is known to differ within each individual, when individuals are examined as a group, a direct and undeniable relationship is seen between delay and survival. The consensus reported by all of the studies was that breast tumor stage ut diagnosis increased overall with delay (defined as symptom duration prior to treatment), and that increased stage was associated overall with decreased survival. Essentially this work provides documentation for the relationship between delay and survival that was only assumed in earlier reviews [12, 33, 341. Fisher, Redmond and Fisher [ 151observed that this relationship between delay and survival was not linear, suggesting that other variables played a part in determining survival. Two of the recent studies examined variables that might explain this observation. Neave, Mason and Kay [4] studied 1675 breast cancer women in New Zealand, gathering data by patient questionnaire and medical record review. These investigators considered tumor size, steroid receptor status, and histology, as well as the frequency of skin and nipple involvement. Defining delay as “the time interval between discovery of first symptom and date of positive biopsy.” they calculated the mean delay in their sample (6.5 weeks), and used this mean to divide their sample women into ‘short’ delayers and ‘long’ delayers. Long delayers were observed to have significantly increased tumor size, skin attachment, and nipple retraction. Somewhat surprisingly, there was no difference between groups in terms of the presence of positive axillary nodes or distant metastases. The investigators explained these unexpected findings in relation to a subgroup of women within the ‘short’ delay sample. Women in the subgroup exhibiting short delay had more grade III histology and pro-

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gesterone receptor negative tumors, more positive axillary nodes, and more distant metastases. The study by Rossi et al. [5] made similar observations. In 189 breast cancer women in Rome, Rossi and his colleagues noted that the likelihood of grade III histology and the presence of metastases were increased in women who exhibited both very short and very long delays. Studies of the impact of patient delay on survival may need to control for these and perhaps other tumor growth variables to achieve more accurate analysis of this relationship between delay and survival. Several studies currently under review have reported delay to be insignificant to survioal once stage of tumor at diagnosis is taken into account [6, 19,271. The ill-conceived use of statistical methods of data analysis might be the culprit responsible for this dangerous and illogical inference. As mentioned previously, one can expect a high correlation between the variables ‘tumor stage,’ ‘tumor size/mass,’ and ‘symptom duration’ (delay). Multiple regression data analyses which include all of these variables, particularly hierarchical regressions where tumor stage is introduced first as a covariate, will produce results indicating that delay contributes no additional explained variance. This situation is perhaps an exquisite example of when theory must guide analyses, lest we increase the data-dredging death count. That tumor stage, considered both across and within individuals, is at least partially dependent upon symptom duration, cannot be denied. Understanding the implications of stage at diagnosis for survival is no doubt important. But the fundamental concern is to reduce mortality, and researchers should not lose touch with the overall objective. No health care purpose is served by diminishing the importance of the delay variable in research reports. Clearer explication of the theoretical framework and intended human applications guiding research questions and hypotheses will help to eliminate these research cul de sacs. WHAT CONTEXTUAL VARIABLES ARE THOUGHT TO AFFECT THE TIMING OF SEEKING HELP FOR BREAST CANCER SYMPTOMS AND THE TIMING OF BREAST CANCER TREATMENT?

Symptoms warning of the onset of illness, in this case of breast cancer, are experienced by people within the context of their every day life. The personal, social and environmental variables that have been suggested to determine when women present their discovered breast cancer symptoms for evaluation and treatment, and when health care providers effectively begin that treatment, appear to be numerous and complexly interconnected. The majority of investigators in the studies under review utilized existing data sets and thus were limited by the subset of variables available. The studies relied predominantly on chart review or tumor registry date rather than interviews or surveys completed by the sample

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NOREEN C. FAC‘IONE

women themselves. Few of the studies supplied guiding research questions or described the testing of hypotheses for the predictors of patient delay. This is unfortunate in light of the wealth of social behavioral theory that might readily have been applied. To organize the contextual variables directly examined or opportunistically observed in these studies, this review will group the variables into categories derived from the rich literature of social behavioral theory [35-371. Reported findings will be discussed under six headings: (I) consequential heliejk (beliefs in the consequences of delaying helpseeking, the curability of symptoms, the consequences of treatment, etc.), (2) cues to uction (in this case, the discovery and interpretation of the breast symptom), (3) cjj%cri~ responses (feelings related to the discovery and attribution of the symptom), (4) sociul influcnc~e.s (expected helpseeking behavior arising from relationships or roles), (5) hcrhils clnd prior Ieuming (prior helpseeking and health promotion behavior), (6) wndif ions (economic fkditating erwironmentul resources and access).

Consequential

he1kf.r

Can it be that women still do not realize the significance of a breast cancer symptom? In Antonovsky and Hartman’s 1974 review [33] of all cancer types, 21 studies are reported in which high percentages of women indicated that they did not realize the significance of the symptom. Improvement in this area is surely not obvious in the current studies, where attributing the symptom to a benign process was a common theme reported by investigators [2,9. 13, 291. Studies have reported that health beliefs predict breast self-examination practices [38, 391, and the use of mammography screening [40], but few have investigated the consequential beliefs operative for helpseeking in relation to self-discovered breast cancer symptoms. Lauvcr and Chang [4l] used an eight item ‘expectations’ scale including ‘loss of breast.’ ‘knowledge of treatment options,’ and ‘knowledge of whether or not one had cancer,’ to measure conscquential beliefs. The summed expectations score. weighted by matched valuation items (in the tradition of expectancy-value theory), was reported as signiticantly associated with delay. Timko [42] reported that the intention “to monitor a breast symptom for a time rather than immediately calling the doctor” showed high positive correlation with the belief that the lump would go away, and high negative corrclations with beliefs that a complete cure would be less likely, the need for surgery and/or disabling treatments would be greater, or that death might occur. Pin-pointing influential but incorrect beliefs will increase the likelihood that women’s decisions to delay are based on accurate rather than incorrect understandings of the consequences associated with delaying help seeking.

Both of these studies utilized a design where well women were asked to imagine a discovered breast symptom and to indicate their likelihood of seeking immediate care. These studies are representative of studies which examine the ‘intention’ to perform a given behavior rather than the behavior itself. Social psychological research [35, 371 supports the assumption that a stated intention is highly predictive of actual subsequent behavior, provided new influences do not occur to cause changes in the intention. It would be preferable for women to have the intention to seek help rather than delay when a breast cancer symptom is discovered, even if this intention does not result in the actual intended behavior in each and every case.

The nature of the breast symptom has been reported as atfecting the timing of help seeking for breast cancer symptoms. In spite of the increasing availability of mammography, breast cancer symptoms remain largely self-discovered [5. 32.431. Seven of the current studies reported the frequencies of presenting symptoms in their samples of women with breast cancer. A ‘lump.’ with or without accompanying pain. was the most common presenting symptom, occurring in from 65 to 86% of cases [5. 13. 17. 21. 23. 30 -321. The frequencies of presenting symptoms other than a lump ranged as follows: pain (4~12%). bleeding or discharge (2 12%) dimpling or tissue thickening (3-5X). inverted nipple (2215%). As early as 1959. Aitken-Swarm and Patterson [44] reported that experiencing presenting .s~~n~ptonz.r other than

0 lump

I’m

ussocifrtcd

with

.sign~j7f~arzt!)~ greuter

This observed relationship was supported by seven of the current studies under review [l3. 17, 21. 23, 31. 32.451. Two other studies observed no difference in delay by presenting symptom [5. 291. The statistical designs used to address this question are not specified in the studies, but differences in this relationship tnight be attributable to differences in statistical measures: l’ test (lump/other than lump by delay/not delay) vs one-way analysis ot variance (delay measured as a continuous variable by varying categories of presenting symptom). Small sample sizes may have also played a part in some of these analyses. Presenting symptoms other than a lump was also reported as associated with significantly greater pror’ider clelr~~ in the study by MacArthur and Smith [l7]. In their study of I45 breast cancer women in Great Britain. although more than 85% of women with lumps were referred for treatment ,t,ithin 2 cicr~~s, only 68.5% of women with presenting symptoms other than a lump were referred within 3 months. No other studies quantified provider delay by symptom characteristic, but several other studies reported biases or unwarranted diagnostic assumptions held prrtimt

&I~~~~ [44].

Breast symptoms and delay: a critical review by providers that might be resulting in provider delay for certain groups of women. The Physicians Insurance Association of America (PIAA) study [20] reported that the most common reasons for delay in diagnosis of breast cancer by physicians were: physical findings that failed to impress the physician, and their overall lower index of suspicion that the lesion represented a cancer when younger women presented self-discovered breast lumps. This study reported that women younger than age 40 brought 40% of the claims against physicians and received 58% of the paid indemnity. Menon, Teh and Chua [I] also reported the 359 Singapore women in their sample experienced increased provider delay in relation to age. The women under 35 years of age experienced increased provider delay (65%) when compared to women over 35 (8%). These investigators attributed provider delays to unwarranted expectations of benign disease in younger women rather than a working diagnosis of breast cancer. Adam et al. [ 131 reported that physicians’ misattributions of breast symptoms to benign causes (mastitis, fibrocystic disease, menopause, stress, weaning) were associated with 612 week provider delays for 33% of their 162 woman sample. And lastly, in a small qualitative study of delay in help seeking for breast cancer symptoms, Lierman [23] reported that only 6 of IO women received treatment shortly after seeking care. Misdiagnosis of fibrocystic disease, misinterpretation of mammography films, and false reassurance that the lesion was benign, led to procider delays for four of the sample women, until additional symptoms appeared and prompted the women to again initiate help seeking. More than 50 years later, current studies show that provider delays are considerably longer than the one month estimated by Pack and Gallo in 1938 [12]. What explains the apparent ignorance of at least some providers in these accounts of misdiagnosis? Perhaps, the explanation lies in the occurrence of similar presenting symptoms in both benign and malignant cases. In the study by Nichols et al. [21] of 560 symptomatic women, 72 of which were later diagnosed as having breast cancer, all of the initial presenting breast cancer symptoms were more common in the women diagnosed with benign lesions. In light of these considerations, the misdiagnosis of symptoms by providers would seem more understandable, and judgements of ‘ignorance’ would appear somewhat unfair, tempered by the realization that interpreting breast symptoms is more problematic than might be expected. Indeed the mere suggestion of the word ‘ignorance’ might have caused some to rise to the defense of the diagnosticians. This discussion has a deeper purpose, however, and that is to suggest that similar judgements of ‘ignorance’ or lack of knowledge universally applied to women who experience breast symptoms and delay seeking help are perhaps equally unfair and ignore the realities of women’s somatic breast experience.

I525

This is underscored by studies that report that knowledge, in the form of correctly attributing a symptom to breast cancer, does not appear to guarantee early case-finding. In their 1974 review of delay in help seeking for breast cancer symptoms, Green and Roberts [34] noted two studies that associated cancer attribution with decreased patient delay [46,47] and one study that reported an opposite finding [44]. Two current studies bearing on this question do little to illuminate the relationship between a woman’s attributing her symptom to cancer and the timing of her help seeking. Mor et al. [9] reported that breast cancer patients attributed their symptoms to cancer more often (35.8%) than lung (4. I %) or colorectal (9. I X) cancer patients, but they noted no significant differences in patient delay in relation to cancer attribution. Gould-Martin [31] and her colleagues studied 274 New York women with breast cancer and reported that the percentage of women who discovered a breast lump while performing breast self-examination were more likely to delay (48%) than those who discovered their lumps accidentally (38%). Women practicing breast self-examination delayed an average of 31 days while women discovering their lesions accidentally delayed an average of only seven days. Whether the self-monitoring behavior of women who practice breast selfexamination might have predicted this observed difference deserves investigation. Perhaps future research investigations emphasizing qualitative data might shed more light on why many women who attribute their symptoms to cancer do not seek immediate care. The concept of ‘denial’ falls somewhere in the vicinity of discussions of symptom attribution, although its theoretical connection remains to be clarified. Antonovsky and Hartman [33] proposed the possibility of a continuum between denial of symptoms and hypochondriasis, suggesting that this relationship might be captured by psychological instruments measuring the concepts of repression and sensitization. Denial of symptoms or the possibility of cancer has not been a frequent construct in the studies currently under review. Women’s denial of a symptom’s relatedness to cancer was associated with delayed help seeking in a study by Worden and Weisman [29]. Denial in this sample was exhibited as a reluctance to use the word ‘cancer,’ denying their physical incapacity and minimizing the seriousness of their illness, In the only other study focusing on denial, Wool [48] compared 20 women who had delayed for at least three months and had palpable tumors (by which she defined ‘extreme denial’), with 30 women who were described as not exhibiting extreme denial. The main hypothesis of Wool’s study was that women who were extreme deniers would demonstrate immature object relation functioning. Object relationship functioning is believed to predict one’s ability to form affectional bonds, develop reality testing, and to perceive and cognitively evaluate

I526

NOREENC

such occurrences as breast cancer symptoms. The hypothesis was not upheld, but Wool’s small sample size may not have provided the power to adequately test her hypothesis. Inadequate descriptions of the reference group also raise questions regarding the reported lack of relationship, but this study is notable for its hypothesis testing and use of instruments with established reliability and validity. Afleective responses

In their 1974 review, Antonovsky and Hartman [33] recognized that the effects of fear in relation to the discovery of a breast cancer symptom may differ depending on the nature of the fear. They also broached the idea that the relationship between fear and delay may be curvilinear, with both high and low levels of fear associated with longer delays. The Green and Roberts [34] review, which focused specifically on breast cancer, cited a number of specific fears in relation to the discovery of breast cancer symptoms. Table 2 lists these and others drawn from the current studies. The list, although perhaps not exhaustive, demonstrates numerous possible manifestations of fear in relation to the discovery of a breast cancer symptom and the anticipated sequelae. Emotional responses related to the discovery of symptoms were reported as influencing the timing of help seeking by several of the studies currently under review, but the reported direction of the effects on seeking help for symptoms was mixed. Fear of mastectomy was the leading reason given by Nigerian women (44.7%) for delaying consultation and treatment in a sample of 2154 breast cancer patients reported by Ajekigbe [2]. Responding positively to the structured probe “fear of discovering the cause of the breast symptom” was attributed to 20.7% of the 214 breast cancer patients in the study by Mor et a/. [9]. Fears associated with dying, breast loss and breast cancer disease itself were reported as associated with increased delay by Magarey, Todd and Blizard [49]. Research to date has not developed a model to predict the influence of varying fears on seeking help versus delaying help seeking. Knowledge of what magnitudes of fear might precipitate or retard action, how fears might inter-relate, and which have dominant status is also lacking. The impression of a cascade of fears suggests that a qualitative Table 2. A fear cascade Fear Fear Fear Fear Fear Fear Fear Fear Fear Fear Fear Fear

of of of of of of of of of of of of

doctors and hospitals ridicule embarrassment chemotherapy loss of feminine role illness the unknown of cancer the loss of a breast disfigurement loss of ability to mother unmanageable expense death

Fear Fear Fear Fear Fear Fear Fear Fear Fear Fear Fear

of of of of of of of of of of of

surgery

abandonment loss of control loss of femininity radiation therapy being dehumanized losing a sexual partner pain isolation surgeries/anesthesia entering a submissive role cancer spreading after

research design might oft‘er significant promise for an exploratory investigation of this phenomenon. Anxiety. as an affective response to the discovery of a breast cancer symptom, has been a focus in five of the studies under rcvicw. In their study of 99 well women imagining the discovery of a breast cancer symptom, Lauver and Chang [4l] reported anxiety as a significant predictor of the intention to seek care. MacFarlane and Sony [50] assessed anxiety associated with a breast biopsy in 42 women with benign symptoms. lesions . 24 of whom had self-discovered They reported anxlcty. measured by a modified version of the State Trait Anxiety Inventory (STAI) [51], to bc significantly increased in women who had dclaycd longer in contacting a physician. Three other studies [7. 8.391 found no significant relationship between anxiety. variously measured by the Manifest Anxiety Defcnsivcncss Scale [52] or the STAI. Several possible explanations exist for the opposing results in these studies. The confidence that can be placed in many of the studies is limited by threats to validity inhcrcnt in their study designs. Small sample sizes, sample inclusion criteria, the study of real versus theoretical symptoms and particularly the timing of data gathering raise serious validity concerns in these investigations. With what degree of confidence can anxiety levels bc measured while awaiting breast biopsy [7,49. 501 or during hospitalization for mastectomy [8] be said to reflect anxiety related to the discovery of the symptom itself and the anticipated sequclac? The difficulties surrounding the measurement of anxiety in response to discovery of the breast cancer symptom itself would appear to present significant practical problems for the investigator who is likely to have access to symptomatic women only crfier they enter the treatment environment. It is unclear. in any event. whether generalized measures of anxiety are good predictors of behavior in response to discovery of a breast cancer symptom. Indeed. the assumption that anxiety would be associated with incrcascd delay in help seeking may itself be mistaken. Anxiety might rather arise from a need for relief from the ambiguity associated with a discovered breast change, the need for a definite diagnosis of the problem. or the need to take action rather than remain inactive. Four other affective descriptions were suggested as possibly significant to delay behavior by the Antonovsky and Hartman review [33]:,fatalism guilt, shatnc. and enzhurrtrssnlent. These responses were anecdotally reported as reasons women gave for delaying professional evaluation of their symptoms. Antonovsky and Hartman [33] theorized that these were perhaps more personality traits than situation limited affective expressions. Their presence or absence in the person’s behavioral patterns, they believed, were more likely to pre-date the arrival of a cancer symptom. Although these affective responses are frequently mentioned as important influences in relation to the experience of cancer illness in general,

Breast symptoms and delay: a critical review as influences predicting breast self-examination behavior, or as explanations of extreme delay and latestaged tumor presentation, they have yet to be scientifically examined in relation to breast cancer symptoms. Two studies included in this review examined the constructs that might be hypothesized as conceptually ‘close’ to fatalism. Keinan, Carmil and Rieck [7] used the Beck and Weisman Hopelessness Scale [53] to measure hopelessness in women undergoing biopsy for breast lumps. A small sample size (N = 62) and the inclusion of women whose symptoms were physician-discovered limit the confidence that can be placed in their report of no observable relationship between hopelessness and delay. Worden and Weisman [29] reported the feeling of powerlessness as significantly influencing ‘lagtime’ in seeking care in their sample of 125 patients with a variety of malignant tumors, 42 of whom were women with breast cancer. Lagtime was proposed by these investigators as a preferred term to delay, and as a way to eliminate the patient blaming entailed by the term ‘delay.’ Their point, that nothing is to be gained in itself by ‘blaming’ either patients or providers, ought to be an axiom for all investigations of the delay phenomenon. The emphasis should rather be on identifying factors responsible for preventable patient and provider delay and eliminating these factors if possible. Although one study of help seeking for cervical cancer symptoms reported a prevalence of fatalistic beliefs in 39 black women from North Carolina [54], none of the current studies examined feelings of fatalism, guilt. shame, or embarrassment for their effects on help seeking for breast cancer symptoms. The likely influence of these affective responses would be to increase delay in help seeking. Such hypotheses should be tested and the power of any observed influences assessed in relationship to other potential influences on help seeking vs delay. Of particular interest is whether, for at least some women, the presence of one or more of the above four affective responses relegates all other potential influences on help seeking to secondary importance. Carefully crafted investigations of women’s affective responses to breast symptom discovery remain a focus for future research. Social inj7uence.7 Contextual variables grouped under the umbrella of ‘social influences’ include: social normative influences women may perceive in relation to significant others (for instance, spouses, siblings, children, providers), and perceived demands arising from social roles. This definition of social normative influence, borrowed from social psychological theory [35,37], provides a framework to interpret observed relationships in the current studies. The idea that women respond to normative influence from significant others, particularly their spouses, suggests that married women might delay less than others. However, no difference in delay by marital status

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was reported by Worden and Weisman [29] nor by Rossi et al. [S]. Perhaps refining the operationalization of this variable to include all women in partner relationships would prove more informative. Lauver and Chang [41] extended the definition of social normative influence even more broadly, using items that asked women to rate the degree to which 8 types of significant others believed she should seek immediate care for a breast change. Social norms were not reported as significant predictors of help seeking in their analysis. A later discussion of the same study interprets an apparent difference in social normative influence by race [55]. This discussion, however, warrants no confidence in view of the study sample which mixed women from a black church with graduate nursing students, yet failed to control for the introduced confounding variables of socioeconomic status, educational level and particular health knowledge. Utilizing the Theory of Reasoned action to predict the intention to seek care for a breast cancer symptom, Timko [42] reported that social normative influences were significant predictors of the intention to help seek. Notably, 44.8% of the women indicated their intention to delay calling the doctor and rather to self-monitor the symptom for a time (not specified). These women cited desires to maintain control over their day to day experiences and the intention to retain responsibility for their own health assessment. This study is provocative in its suggestion that asymptomatic women are not highly inclined to intend immediate help seeking for a breast change. Delaying help seeking as a consequence of perceived social role demands (for instance, mother, spouse, employee) has been reported in studies of women’s general illness behavior [Y&59]. Studies of help seeking for cancer symptoms in tumor sites more equally distributed between males and females have reported no differences in the timing of help seeking by gender [6@-63]. But in several of the studies currently under review, anecdotal comments women give as reasons for delaying help seeking suggest otherwise. Devoting time and attention to needs of someone else [9, 13,24,29], taking time to make domestic arrangements prior to the biopsy [13], demands associated with summer and school holidays [13,23,24], work related demands [24], caring for other ill family members [13,24], and the temporary presence of relatives in the home [ 131 were all suggested as receiving priority over discovered breast cancer symptoms. Significant support for the hypothesis that role responsibilities influence help seeking is added by Dignan et al.‘s [54] focus group study of help seeking for cervical cancer symptoms. They reported women indicating that they would seek care in relation to the need to fulfil role responsibilities and only after child care was assured. Future investigators should test this possible relationship between perceived and/or actual traditional female role constraints and help seeking for breast cancer symptoms.

NOREENC. FACIONE

I528

Habits

and prior

learning

Several researchers have reported that the practice of breast self-examination is significantly associated with decreased delay in help seeking for breast cancer symptoms [I& 25,281, supporting the idea that breast health habits might be predictive of decreased delay and early case-finding. This relationship is not a simple one, however, exemplified by the 20% of the women in the study by Huguley et al. [I 8, 251 reported as practicing breast self-examination but delaying help seeking for a discovered symptom for three months or more. No investigators reported relationships between delayed help seeking and the prior use of mammography screening or prior experience with professional breast examination. The assumed positive relationship between immediate help seeking and practicing breast cancer screening behaviors remains unproven. Green and Roberts [34] reviewed several studies which suggested previous general help seeking habits were highly influential in help seeking for breast cancer symptoms [6466]. No studies currently under review directly tested this hypothesis, but several provided observations relating past life experience to help seeking behavior. Having a prior history of fibrocystic (benign) breast disease was observed to be associated with longer patient and provider delays, although no statistical tests of this relationship are reported [13,23,24, 311. Women and providers alike were observed to falsely attribute breast lumps to the benign hbrocystic process. Biopsy was reported as being delayed until additional symptoms provoked reassessment 1241. Would a person with a chronic illness be more or less likely to seek help early for a breast cancer symptom? Factors like the habit of utilizing health care services, an established relationship with their health care provider, and generalized trust in the health care system would argue for early help seeking effects. Factors like comorbid symptoms masking symptoms of new disease, fatalism related to the illness condition, reluctance to spend more financial resources on personal health care, etc. might argue for increased patient delay. Future studies should explore these hypothetical relationships, The habits of health care services utilization include not only experiences with providers but also the habit of using non-traditional healing practices. Belief in divine healing was reported to be associated with delayed help seeking by the Green and Roberts’ [34] review, as was a prejudice against doctoring and the general lack of confidence in doctors. Ajekigbe [2] reported the use of prayer houses and spiritual healing homes (13.5%) and a preference for herbalists (23.1%) in a study of 2154 Nigerian women. Traditional healers and spiritual healing is also common in black communities in the United States [67-691. Although hypertension studies report traditional healing practices, no studies have suggested that

black women in the United States currently seek traditional healers for breast cancer symptoms. Health food diets and natural cures are commonly used by persons who experience cancer symptoms. The American Cancer Society maintains a listing of common but scientifically unproven topical preparations and dietary methods used by persons in the United States and Western Europe [70]. The proportion of women who use these cures rather than seek immediate evaluation and treatment from a provider is not known. Few researchers have described the self-care practices women might try in attempting to cure their breast cancer symptoms [23.24]. Applying antibiotic ointments to cure ulcerations on the nipple, changing bras to correct pain under the breast, washing the nipple to clear nipple secretions, rubbing hardened areas to soften the tissue, applying heat to reddened. painful skin areas [24], removing bra padding. and pulling on the nipple to correct nipple inversion [23], were cited as actions taken prior to help seeking. Whether these behaviors are at all reasonable remains to be assessed in relation to the frequency of occurrence of benign breast symptoms in the general population. Facilitating

erwironmental

conditions

Only two studies currently under review directly examined economic resources in relation to help seeking for breast cancer symptoms. Economic constraints were reported as affecting women’s help seeking for breast cancer symptoms in the abovementioned study by Ajekigbe [2]. Lauver and Chang [41] examined being,fil/,r cowred by health insurance in relation to the intention to help seek for a proposed breast cancer symptom, reporting that it was not a significant predictor. Having no insurance was associated with increased delay in the study by Gould Martin [3l]. In light of such few studies, one can only speculate on the reasons for this difference in reported results. Perhaps limiting the operational definition of resources to ‘full coverage insurance’ was too narrow to capture any variance in terms of economic resources in the Lauver and Chang [4l] study. Other studies associated delays in help seeking with women belonging to lower socioeconomic groups [26, 31. 71, 721, but none of these interpreted this relationship in terms of the availability of health care services. That so few studies directly addressed women’s actual or perceived access to health care examinations in relation to help seeking for breast cancer symptoms is striking. This is a significant area of major weakness in the research to date. The assumption that women have economic access to treatment for breast cancer symptoms is unwarranted in many nations [73]. This is no less true in the United States where 34.4 million Americans are without health care coverage [74]. and the poor and middle class have limited options about when and how they can obtain health care [75-751. The political

Breast symptoms and delay: a critical review and economic throughout the need to explore experienced by

realities of the status of women world should alert investigators to the economic constraints to help seeking symptomatic women.

WHAT DO DEMOGRAPHIC INDICATORS ADD TO KNOWLEDGE OF DELAY IN RELATION TO HELP SEEKING FOR BREAST CANCER SYMPTOMS?

Although reported correlations between delay in help seeking and particular demographic variables might assist clinicians and educators to identify target groups for potential intervention studies, they are not adequate to guide the interventions themselves. Even if‘ it were the case

that gender,

ruce,

age,

religious

qfiliation,

marital status etc. were causal rather

correlated

variables fbr delayed

help seeking,

than

they are

not variables amenable

to change. What is needed is a better understanding of why, for instance, age or race is correlated with delayed help seeking in a particular study. Researchers hopeful of increasing breast cancer survival through early case-finding must hope that the reasons why will turn out to be variables that are amenable to change. Gender, marital status, and socioeconomic status have already been discussed as contextual variables influencing delay. To be of possible benefit to women with breast symptoms, research that reports differences in help seeking in terms of these population demographics should also place these variables within a testable theoretical context. For example, a widely asserted but untested belief is that “poverty is one of the stronger predictors of delayed help seeking” [75, 76, 79,801. But is it poverty itself, or is it the associated misinformation, social role responsibility, or lack of health care access which is at the root of the relationship? Race

Research prior to 1974 had not focused on the question of whether delay differed by racial or ethnic group. Since that time several studies have been published that report relationships between race, delayed help seeking and treatment, and decreased survival. These studies typically utilize data sets from tumor registries in large metropolitan areas, and fail to differentiate the confounding effects of socioe&nomic status and access to health care. Most studies report increased delay in black and Hispanic women, populations who are over represented in lower socioeconomic groups. Reported statistics on the average stage of tumor at diagnosis by racial group clearly identify black American women as having more advanced staged tumors at diagnosis [81, 821 and decreased survival of breast cancer [ 18,27,62, 82,831. One study by Dennis, Gardner and Lim [16], using 1965-1970 chart review data, reported significantly increases in provider delay in the treatment of black women when compared to white women in their sample of 237 breast cancer women from New York.

I s2u

There was no difference in patient delay by race in this county hospital sample where 47.1 o/o of the women delayed help seeking for 3 months or more. This result is consistent with the hypothesis that it is poverty (not race) that predicts longer patient delays. and raises the question of racial and cultural bias in provider delays. Dayal et al. [83] also attributed apparent racial differences in patient delay to differences in socioeconomic status in their study of‘ 903 breast cancer cases in Virginia, noting the high degree of association between race and socioeconomic status. Survival differences were also nonsignificant by race in this sample. once socioeconomic sIatu>, was held constant. The study by Dennis rt al. [ 161 also raises the issue of whether minority populations delay help seeking because of perceptions of how they will bc treated by health care providers. Previous research on health care utilization in minority American populations indicate that black Americans utilize health cart services less regardless of their degree of illness [84, 851. Stack [86] reminds researchers in the United States of the overt racial discrimination practices that. until 30 years ago, found white doctors in some states scheduling night office hours for negro patients to avoid offending their white patients. Although these days are passed, severa! studies of the utilization of health care by black Americans suggest that c’or~~r’/ racial biases might remain in many health care cnvironments. A lack of respectful treatment was rcported by 43% of the black and Hispanic patients of a Los Angeles medical clinic in a study reported in 1991 by Haynes [87]. In 1992. Harrell [XX] reported black women refusing a prenatal program to decrease low birth weight in their infants because of disrespcctful treatment by providers and clinic staff. A realistic look at the possibility of racial or cultural bias influencing help seeking is warranted [X9]. not just in the United States, but in every setting where powerful sub-groups might limit access to health care. According to Hongvivitana [90] of the World Health Organization, access to care implies care delivery will bc mindful of human dignity and culturally sensitive. Research investigations that examine help seeking behavior in populations that may bc subject to cultural or racial bias need to examine this hias as a possible influence on help seeking behavior. Several of the larger epidemiological studies have suggested that combinations of demographic descriptors signal late staged tumor presentation. Black race and lower socioeconomic status was associated with increased delay, increased stage at diagnosis and decreased survival in a study of breast cancer women in Texas [27]. This relationship was also reported in the 1977-1985 sample of 28,486 Los Angeles, California women studied by Richardson et al. [32]. Hispanic women in this sample also had later staged tumors and decreased survival. Mandelblatt and his associates [91] also reported race and socioeconomic status as risk indicators for

1530

NOREEN C.

delay and late staged tumor at diagnosis, adding older age and used New York tumor registry data to identify the predictors of late staged tumor presentation. Using logistic regression these investigators calculated that black, poor, older women. receiving care in a public hospital. were 3.75 times as likely to present with late staged (regional and distant metastases) breast tumors than white. younger, higher income reference group women receiving care in private hospitals. Satariano [8l] also reported being black and elderly as compounding the risk of later staged tumors at diagnosis in their examination of cancer surveillance data from Detroit, U.S.A. (iy = 17,361). In fact. black women delay help seeking longeithan white women is reported by six of the studies under review addressing this issue [27. 3262. 82. 91, 921. But how helpful is such a finding as a guide to interventions if none of the underlying reasons are discovered? Whether the observed difference is rclated to differences in access to care, to differing knowledge about cancer symptoms or beliefs about cancer curability [93,94], or to other reasons. remains a focus for future study.

The review by Antonovsky and Hartman reported a consensus in their reviewed studies that older persons delayed help seeking significantly longer (all cancer sites). Unfortunately Green and Robert’s [34] review published in the same year but focusing specifically on breast cancer studies does not discuss age in relation to delay. This association of delay with older age in women with breast cancer symptoms was reported in the study by Nichols et NI. [2l]. In their sample of British women awaiting biopsy. age was reported to be associated with both delay and eventual malignant diagnosis. That age should be associated with malignancy is consistent with incidence curves for breast cancer. but confidence in the reported relationship between patient delay and age in this sample is somewhat limited by the fact that only 8% of Nichols’ sample was age 65 years or older, with the ‘very elderly being excluded from sample selection. In a surprising reverse of the Antonovsky review. IO studies currently under review reported no difference in delay by age [I. 2. 5. 13, 14, 16,25,29. 72, 921. One hypothesis that might explain this apparent difference is that studies of women prior to 1975 captured a cohort of women which differs significantly from the cohort in the current group of studies. Such an hypothesis seems credible considering that the beliefs and realities surrounding the treatment practices and potential for cure of breast cancer in women of advanced age can be shown to have changed over the years [72.95,96]. That cancer of the breast remains treatable in older women in spite of moderate delays in help seeking is supported by a new study from Poland. In a study of 325 Polish women

FACIONE over 70 years of age, 54% of whom delayed help seeking for more than 6 months, Nagadowska and Kulakowski [3] reported that delay was associated with the number of cases that were judged to be inoperable but not with survival overall. Unlike the relationship reported in other studies which include women of all ages, delay was associated with increased stage of tumor only when women had delayed for more than 24 months. It is likely that these findings are somewhat overstated in that the sample included only women who were referred for surgical consideration. Women with delays that resulted in tumors that appeared inoperable to their primary physicians were, thus, not included, altering to some degree the observable effects of delay on stage. Older persons have been reported to delay seeking care because of attributing symptoms of illness to normal aging [72,97,98]. Freeman and Wasfie [30] reported a high incidence of comorbidity in their sample of 708 Harlem, New York, breast cancer patients. Interview of I70 consecutive patients resulted in 260 significant comorbid conditions being identified. most commonly diabetes, hypertension, and ischemic heart disease. Fifty-six percent of the women in this sample were reported to have delayed help seeking for more than 3 months. That this high rate of comorbidity is representative of the older women with breast cancer symptoms suggested by the supplement on Aging to the United States National Health Interview survey. The survey reported that slightly more than 40% of women aged 55.-84 with breast cancer had one or more additional limiting health condition, a similar proportion to that expected in the normal age-matched population [99. loo]. Some researchers have suggested that fatalism may be more significant and even appropriate in this population [23, IO]]. A sense that one has lived long enough and it is now time to die, economic difficulties, lack of family support through illness, disbelief that cancer can be cured or that one could survive a surgery, all seem plausible influences on the decision to delay seeking help for a breast symptom, particularly if it is attributed to cancer. But to explore the contextual issues that might explain any observed relationships between age and delay, studies must be designed specifically to target these issues and concerns of the elderly and have samples which include adequate representation of the older population. Practical difficulties that limit this effort include physician refusal to let women be contacted for study or, in the case of longitudinal studies, death of the patient before data gathering is complete. DIRECTIONS

FOR

FUTURE

RESEARCH

Researchers endeavoring to build on the existing knowledge of help seeking behavior for breast cancer symptoms need to change the focus of their investigations in the future. It is no longer necessary to scan

Breast symptoms

and delay: a critical

sets for target groups who present later staged tumors. The poor. and women of color, are overrepresented among those who delay in the United States, but fully one third of all breast cancer women are symptomatic for several months before seeking evaluation and treatment. Delays reported in studies from other nations suggest that this statement is also true if not under-estimated in other countries [l-3, 141. Provider delays, while evident, are largely under-researched. Studies should document provider delays and identify diagnostic protocol and institutional changes that might be necessary to decrease provider delay. It will be important to address the issue of whether patient and provider delay are decreasing. Rather than quantifying delay as the percentages that delay for some number of months, delay should be quantified as a continuous variable, measured in days. Average delays (means) as well as ranges of delay (standard deviations) should be regarded as the reporting standard for published studies on both patient and provider delay. This will permit us to achieve the potential of scientific comparison across studies and benefit from the knowledge that can be gained from meta-analyses. Such reported means and distributions can then be used to assess if efforts to decrease delays and improve early case-finding and prompt treatment are having the desired effect. The terms researchers use to describe ‘patient delay’ or what has been described in this review as ‘provider delay’ are not as critical as the presentation of data in ways that other scientists might share in the knowledge obtained. Thus if researchers strive to study and present findings on ‘patient delay’ in terms of the period from symptom discovery to initial provider consultation (rather than biopsy, diagnosis or initial treatment), their research can be better used by both those who study a woman’s behavior prior to help seeking and by those who study the impact of symptom duration on survival. Patients may indeed be responsible for some portion of the delay that occurs after the initial consultation and before the initiation of definitive treatment. As more knowledge develops regarding the provider period of delay, it may be possible to separate the patient contributions to this period from the delay caused by providers and the health care system. Several of the British studies currently reviewed endeavored to quantify provider delay in terms of delays attributable to primary physicians and delays attributable to referral physicians and hospitals. This further self-study of provider delay is desirable, although it will doubtless need to be individually tailored within each national health care system. data

Additional

methodological

considerations

If a study’s specific aim is to identify the predictors of a woman’s behavior in response to a self-discovered breast cancer symptom, then the sample should

review

1531

exclude women with breast lesions discovered by health care providers, and those with lesions representative of recurrent breast cancer. Whether one studies symptomatic women awaiting diagnosis (which will include those with benign as well as malignant lesions) or those with confirmed carcinomas is a design issue which should be guided by the research question itself. Although studying breast cancer women adds validity in terms of studying actual behavior in response to actual breast cancer disease, knowledge is also needed about the well community of women, as it is these women’s eventual breast cancer that is the target of early case-finding intervention programs. As a matter of course, research questions and hypotheses should be generated in the beginning planning stages of an investigation as guides for the study design, and these questions and tested hypotheses should comprise the primary focus of literature reports. Few of the reviewed studies described the testing of theory-guided questions or hypotheses to explain delay behavior in relation to breast cancer symptoms. This review would indicate that enough is known about delay in help seeking for breast cancer symptoms to permit the structuring of clear hypotheses for testing in future investigations. This practice of relying on clear theoretical maps will advance the understanding of delay more surely than additional explorations of data sets. Research guided by theory can better resist the pitfalls of over-interpreting correlational findings demonstrated between easily available or too narrowly defined variables. High degrees of multicollinearity between co-present variables (for instance, delay and stage; or race and socioeconomic status) will be less likely to permit associational relationships to masquerade as causal determinants of delay. In keeping with the trend in quantitative investigations, the validity and reliability of data gathering tools and methods should be assessed and reported with study results. Sample sizes must be large enough to support planned analyses, providing adequate power to demonstrate the presence or absence of relationships. Researchers should hypothesized communicate both the strengths and limitations of their studies to inform colleague researchers of the technical difficulties surrounding the study of delay. Qualitative investigations are needed to deepen the understanding of the contextual influences on help seeking versus delay. Are the existing descriptions and definitions of patient delay adequate to study women’s behavior in response to the discovery of a breast cancer symptom, or are conceptual modifications necessary? What can be learned about how these contextual influences might interact within the person? The identification of patterns of help seeking or delay behavior through theory-guided qualitative investigations would offer theoretically sound ways to design behavioral interventions to increase early case-finding.

Ii32

NOREEN C

FACIONE

to maintain clear conceptual definitions so that the separate contributions of patient and provider delay can be specified. Culturally sensitive investigations are needed to learn whether improved access will be enough to decrease stage of breast cancer at diagnosis in women of color and other, less powerful, sub-groups. The question to be answered is whether the delay in help seeking can be directly related to poverty, or whether other factors such as beliefs in susceptibility or curability, fears of biased treatment, or culturally defined gender roles constrain help seeking. Provider delay resulting from human biases regarding cultural, racial or sexual orientation differences, highlighted recently in the AIDS literature. could theoretically plays a part in the treatment of breast cancer. To not be open to this possibility would be poor science, as well as poor ethics. Research is at its best when scientists work in concert. Particular focus on these areas will advance the understanding of help seeking versus delayed help seeking for breast cancer symptoms. The goal is to build knowledge to guide intervention programs aimed at early case-finding. care

One area for study pertains to the nature of the breast symptom itself. It would appear that the symptom of a breast ‘lump.’ particularly when painless, not only stimulates earlier help seeking on the part of patients but earlier referral for biopsy on the part of providers, than do other types of presenting symptoms. Several types of research studies are needed to address this problem. The frequency and distribution of all types of breast symptoms in the normal adult female population should be assessed, recognizing that this would include those for which provider cart is sought and those for which it is not sought. Given that the vast majority of women appear to desire early help seeking for cancer suspicious breast symptoms, women’s knowledge of the possible symptom presentation of breast cancer should be assessed and steps taken to correct any dclicits. Lastly. admitting the ambiguity inherently manifest in hrcast symptoms. providers should raise the index of suspicion associated with women’s help seeking for breast symptoms other than lumps. Several studies in the current review emphasized that whcrcas some women do not seek help for symptoms because they do not recognize them to be cancer r&ted. other women attribute their symptoms to cancer and yet still do not help seek. Future investigations arc necdcd which focus singularly on this second group of women. It may be here that the strongest factors influencing delay arc concentrated. This is perhaps the group who should be tapped to explore the ‘fear cascade.’ the psychological construct of denial. the hypothesized influence of fatalism. guilt. shame. and even perhaps anxiety. To study these influcnccs In the greater sample of all women who are dlagnoscd \\ith breast cancer will only dilute their measurement. and confound their interpretation. Breast cancer remains primarily a cancer of women. The study of behavior in relation to breast cancer should be mindful of gender considerations. In the current studies. information regarding role obligations and gender specific meanings associated with breast cancer and breast symptoms appear more to be thrust upon the investigators rather than actively sought as part of the planned research. Gender issues should also be considered when designing studies of provider delay. The issues of access to the evaluation and treatment of a discovered breast symptom cannot be overlooked. No further studies arc necessary to point out the f&t that later staged breast cancer is seen in poorer women. Studies which quantified the relative influence of perceived or actual lack of access on actual or intended help seeking would provide ammunition for those who would argue for equal access to health care access for all citizens. Measures of health care access in such studies should be directly translatable to subsequent intervention plans to improve access. Studies examining access should take special

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Cancer

Society,

grant

was received MPCN-24-2 and

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