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The Psychosocial Consequences of Mammography

The Psychosocial Consequences of Mammography Abstract Increasing numbers of mammograms being performed in the United States will be accompanied inevitably by an increasing number of false positives. According to reliable estimates from a survey of radiology facilities, U.S. women in their forties experience close to one million false positive mammograms every year. To determine the impact of false positive mammograms and the broader psychological impact of mammography, we conducted literature searches of Medline, CancerLit, and PsycInfo. We identified nine studies examining the impact of false positive mammograms. Most found short-term increases in such psychological measures as anxiety, distress, and intrusive thoughts. One study found substantial effects on these measures three months after an abnormal mammogram. Another study found an 18-month impact on anxiety. Few studies have used behavioral outcomes, but one reported overpractice of breast self-exam among women who had received false positive results. Another found no reduction in adherence to mammography among women who have had an abnormal test. The more general mammography literature suggests that many women are anxious about mammography before the exam; women with lower levels of education, African Americans, and women with a family history of breast cancer may be more vulnerable to distress. Unfortunately, this literature suffers major limitations, such as small sample sizes, inconsistent and sometimes inappropriate measures, variations in the time frames for measurement, few studies with women aged 40-49, and a paucity of U.S. research. More research is needed to characterize at-risk women and to test interventions designed to reduce the negative impact of abnormal mammograms. Improved communication is also needed throughout the entire mammography process. Mammography use has increased dramatically in the past 10 years. In 1987, the National Health Interview Survey (NHIS) found that only about one-third of U.S. women had ever had a mammogram, and only 17% had had one in the preceding year (1). By the 1992 NHIS, 70% of women aged 40-49 reported having had a mammogram, 36% of U.S. women reported having been screened recently, and 35% said they had had one in the last year (2). These increases carry an inevitable burden of false positives and false negatives. The number of false positive mammograms received by U.S. women may be as high as 2.75 million, based on the 11% false positive rate found in a survey of community facilities (3) and an estimate of about 25 million screening exams performed annually in the United States (Fletcher S, personal communication). If about 35% of the total mammograms performed each year, based on NHIS data (2), are in women aged 40-49, and 11% are false positives (3), 960,000 abnormal mammograms could occur annually in this age group. Thus, it is appropriate to consider both the negative and positive consequences of receiving an abnormal result. These consequences could be factored into the overall mammography benefit-risk ratio for women of different ages. Studies have examined outcomes of the general mammography experience, such as anxiety, distress, depression, excessive fear of cancer, subsequent practice of breast self-exam (BSE), and adherence to recommended mammography schedules or other follow-up procedures (4,5,6). Some studies have focused more specifically on the psychological sequelae of abnormal mammograms. One concern is that the experience of an abnormal mammogram may not only cause psychological reactions, such as severe anxiety and distress, but also could act as a negative reinforcer deterring women from subsequent mammograms. Yet for a field as large as breast cancer screening, there has been surprisingly little study of the psychological consequences of mammography, especially compared to the amount of research on the psychosocial barriers to mammography. Moreover, most of the studies have been conducted in Europe, leading to an uncertain ability to generalize results to the United States. This review focuses on the psychosocial consequences of abnormal mammograms. Some consideration of the more general mammography experience is presented in order to place reactions to abnormal mammograms in context. Where published, reports about interventions to help women cope with the abnormal mammography experience also are included. The larger issue of compliance with recommended follow-up for abnormal mammograms, while important, is beyond the scope of this report. The literature on the psychosocial consequences of abnormal exams is extremely limited. Three separate searches of Medline, CancerLit, and PsycInfo between October 1996 and December 1996 identified fewer than 30 discrete articles, some of which were anecdotal reports or tangential to the topic. We also wrote to investigators who are conducting research in this area to identify in-press articles—none were forthcoming. This review focuses on published reports about responses to abnormal mammograms and about the psychosocial consequences of mammograms. We included only articles that provided data and were not exclusively case reports, single group analyses, or exploratory studies. Because of the relatively undeveloped nature of the field, nonexperimental studies and cross-sectional surveys were included. However, anecdotal and case reports were excluded. Psychological Impact of an Abnormal Mammogram As Paskett and Rimer (6) have discussed, there can be several consequences of abnormal medical tests. These include labeling, psychologic distress, and noncompliance with evaluation or treatment recommendations. Most of the published research has focused on psychological reactions, such as intrusive thoughts, worry, and distress. Nine published reports (summarized in Table 11) have examined various aspects of the abnormal mammogram experience (4,7,8,9,10,11,12,13,14). There have been other reports, but many of these reports are largely exploratory, and the results are limited by small samples, often collected in a nonrandom manner. Most of the studies on which we focus have included a range of ages; therefore, the results cannot be examined separately for women aged 40-49. The outcomes have included various measures of distress, anxiety, hostility, effect on BSE practice, and impact on adherence to mammography. One study also obtained endocrine and immunologic measures. This first group of studies includes only those empirical reports in which at least some subset of the sample received abnormal results. Women with breast cancer were excluded from all studies except the report by Ellman, Angeli, Christians, et al. (4). Two studies (7,12) found short-term negative emotional reactions in women who have had abnormal thermograms or mammograms, but the sample sizes were quite small. Bull and Campbell (8) sent questionnaires to 750 women prior to breast cancer screening and subsequently to women with normal findings and those who required follow-up procedures as a result of abnormal exams. There was no increase in general levels of depression or anxiety in any of the groups; however, there was a significant increase in the overpractice of BSE among women who required special assessments, especially biopsies, as a consequence of abnormal exams. This is of concern, since overpractice of BSE may diminish the ability to detect subtle changes in breast tissue (15). Ellman et al. (4) compared different subgroups of women in a sample of 733 women in the UK Trial of Early Detection of Breast Cancer. Three months after attendance at a recall clinic, the same proportion (19%) of women with false positive results and with routine screening experienced anxiety. Women with symptomatic benign conditions had anxiety scores that were elevated three months later. Although there was a short-term increase in anxiety among the false positive group, it was not sustained. Sutton, Saidi, Bickler, et al. (13) analyzed data from the National Health Service Breast Screening Programme on 306 attenders and 100 nonattenders; however, only 24 women were in the false positive category. Anxiety was highest at baseline, but, in general, the women were not overly anxious. On retrospective analysis, women with false positives recalled feeling more anxious than negative screenees. Another examination of women in this program found significant increases in worry, and physical, emotional, and social dysfunction was found among the women who were recalled. Distress was higher in women with a personal history of breast problems or a family history of breast cancer (14). The false positive experience may affect women's perceptions about mammography and, thus, make them anxious about future exams. In one of the larger studies (nearly 300 women), Gram, Lund, and Slenker (9) and Gram and Slenker (10) found that women in the Tromso, Norway, screening program who had false positives were retrospectively more likely than negative screenees to rate mammography as unpleasant or both painful and unpleasant. Moreover, they found the effects on increased anxiety to be long lasting: 18 months after screening, 29% of women with false positives reported anxiety compared to 13% of those with negative results. A small proportion (5%) of the women with false positives described the experience as the worst in their lives. About 11% said that their capacity for work was affected during the waiting period, but 44% said that the abnormal mammography experience had an overall positive impact on their lives. Lerman and colleagues (11,16) evaluated women's psychological responses to abnormal mammograms and the effect on mammography adherence. The authors assessed psychological responses and subsequent adherence to mammography among 300 women in an Independent Practice Association-model health maintenance organization (HMO) who had had mammograms with varying levels of suspicion. The degree of mammogram suspicion was significantly related to the strength of the adverse outcome. Women with more suspicious abnormal mammograms reported significantly elevated levels of distress, and their mammography-related anxiety and breast cancer worries interfered with their moods and functioning: in the high-suspicion group, 47% had mammography-related anxiety and 63% had worries about breast cancer; such worries affected the moods (38%) and daily functioning (27%) of these women. Women with high and low levels of impairment were less likely to practice BSE than those with moderate impairment. Intentions to get mammograms in the next year increased directly with the level of mammogram suspicion. Most women with abnormal mammograms obtained their next mammogram on schedule. These data suggest that even when the results of an abnormal mammogram are shown not to be cancer, some women experience negative sequelae. However, this study was conducted among women aged 50-74, and it is not clear to what extent the results would be similar among women aged 40-49. Nevertheless, this is one of the largest and most well-controlled studies of the abnormal mammography experience to date. Overall, the studies indicate that false positives have a moderate but reasonably consistent effect on such psychological measures as anxiety, worry, and distress. The majority of studies found statistically significant short-term increases in worry and/or distress. In several studies, about one-fifth or more of the women reported a negative effect of the abnormal mammogram on their daily functioning. Few studies have included longer-term impact measures. Lerman, Trock, Rimer, et al. (11,16) found a substantial impact at three months after the abnormal mammogram result. Gram and Slenker (10) found significant anxiety 18 months after an abnormal result. In one study, the false positive event seemed to cause overpractice of BSE. Again, few studies have included behavioral outcomes. It is not possible to determine from these studies the impact of abnormal mammograms or the duration of negative sequelae. Psychosocial Consequences of Mammography A small body of literature includes studies of the psychological consequences of mammography in general. These studies are summarized in Table 22 (17,18,19,20). We did not consider the larger literature that is based primarily on retrospective accounts of the mammography experience. Fine, Rimer, and Watts (18) interviewed 250 women immediately after they had mammograms: 60% of the women were anxious about having a mammogram, and 20% were extremely anxious. African-American women were significantly more anxious than white women, and those with a high-school education or less were significantly more anxious than those with more education. Some of this anxiety seemed to be due to a lack of information about what to expect. Baines, To, and Wall (17) assessed reactions to mammography among active respondents as part of the Canadian National Breast Screening Study (NBSS). Only 5.4% of the women said they were anxious about their mammograms, but the majority of those who responded this way said it was because of an abnormal referral. In a large sample (over 2,000 women), Walker, Cordiner, Gilbert, et al. (20) found that prior to screening, nearly 20% of the women had clinically significant anxiety scores and 6% had clinically significant depression scores. These scores decreased significantly between baseline and screening. Some women reported such adverse effects as difficulty sleeping, inability to concentrate, and inability to relax or feel happy during the week before screening. One study (19) with a small sample (n = 53) indicated that women with a high familial risk of breast cancer had significantly higher levels of both acute and nonspecific distress and avoidant and intrusive thoughts after mammography when compared to normal-risk women. These results persisted one month after the normal report. The impact of family or other risk factors on response to mammography should be investigated further, since these women are likely to be advised to start mammography at a younger age. Thus, the evidence from these studies suggests that a substantial proportion (20%-60%) of women are anxious about mammography before their exams; in some cases, the evidence was clinically significant. This baseline level of anxiety, then, could be exacerbated by abnormal results. Some women seem to be more adversely affected than others by the mammography experience. Among those more vulnerable to distress were African-American women, those with lower levels of education, and those with a family history of breast cancer. These may be the same women who will have more negative reactions to the abnormal mammography result, but more information is needed. Many women clearly would benefit from better preparation. Fine et al. (18), for example, found that anxiety was higher in women who felt less prepared for the mammogram. Interventions to Reduce Negative Psychosocial Consequences and to Improve Coping There has been scant research on interventions designed to reduce anxiety and distress and to improve coping after an abnormal result. In one of the few studies in this area, Lerman, Ross, Boyce, et al. (21) sent women in an experimental condition a booklet designed to improve adherence to the subsequent mammogram following an abnormal test. The brief psychoeducational booklet resulted in a statistically significant 13% increase in adherence to the subsequent mammogram. Discussion The research base on the psychosocial consequences of mammography, in general, and abnormal mammograms, in particular, is extremely limited. There are major methodological deficiencies among the published research studies. The investigators have studied different age groups and different time intervals and used a range of measures, measurements, and outcomes. In many cases, the sample sizes were so small as to render the results primarily exploratory. Some investigators have assessed responses immediately after the abnormal experience; others have used different time points. There is little consistency in the use of measures, and the selections rarely have been justified. Only two of the above-mentioned studies—those by Bull and Campbell (8) and by Walker et al. (20)—utilized a common measure to assess the psychosocial impact of mammography, and their samples were quite different. These studies incorporated the Hospital Anxiety and Depression Scale (HADS) to assess the effect of mammography on depression and anxiety. Overall, women attending for routine mammography experienced mean reductions in anxiety of 2.7% (20) and 10.9% (8) following the mammogram. Corresponding reductions in depression were 10.3% (20) and 15.4% (8). The lack of a common set of measures across studies makes it inappropriate to conduct formal meta-analyses. Without a standardized measure, such as an effect size, it is difficult to compare the results of one study to another. Moreover, often the measures themselves are inappropriate. For example, general distress may not be as sensitive a measure as screening-related distress (14). Different levels of support have been provided to help women cope with the abnormal experience, thus serving as a potential confounder. Women's reactions also may be affected by how the results are communicated. The generalizability of results may also be limited by the fact that most of the studies have been conducted in European countries where health care is provided free by the government, invitations are issued for mammography, and psychosocial support seems more likely to be provided. Thus, it is difficult to reach clear conclusions about the impact of mammography or abnormal mammograms on such outcomes as anxiety, distress, or adherence to recommended breast screening. Among some women, there does seem to be short-term distress, and at least one study shows that the level of distress is related to the index of mammogram suspicion. The effects are relatively modest but not insignificant, with most studies indicating, not surprisingly, a significant increase in anxiety among women with abnormal results. While the majority of women do not suffer short-term harm, there seems to be a small group of women who are affected adversely. As Gram et al. (9) showed, the increased level of anxiety persisted 18 months after screening. Thus, the sequelae seem to be largely psychological—effects on such variables as worry, distress, and intrusive thoughts. To date, there is no evidence of a negative impact on subsequent mammography adherence, but only one study included this as a major outcome. There is a need for rigorous research that includes sufficient numbers of women aged 40-49. Sample sizes should be adequate enough to conduct subgroup analyses by race and age. It would be useful to determine how long any negative effects persist after an abnormal mammogram. Research should be conducted in the United States, where cost may be a factor in response to the abnormal experience and where there is not a national health care system. Ideally, some studies would use telephone or in-person interviews to avoid the limitations of self-administered questionnaires (22). It would be helpful to obtain information about whether women missed time from work or usual activities in order to calculate the indirect costs and impacts of abnormal mammograms on women's lives. It is critical to characterize the women who may be more likely to suffer adverse effects. As Swanson, McIntosh, Power, et al. (14) caution, it is important to recognize the diversity of responses when examining the impact of screening programs. Considering the effect on larger populations may mask substantial subgroup differences. If women at high risk for problems in coping can be identified, they can be provided with intervention in a proactive manner. There is some suggestion that women with a strong family history may be affected more negatively by an abnormal mammogram (14,19), but there are few data. Lerman, Daly, Sands, et al. (23) found an inverse association between psychological distress and family history among women with a family history of breast cancer. Lerman, Lustbader, Rimer, et al. (24) also found that high-risk women who were very anxious did not benefit from a risk-counseling program. So, at least among some women, there is reason for concern. Clearly, anxiety can interfere with learning. More investigation of this group is essential, since the current activity in genetic testing for cancer susceptibility is likely to result in more younger women having mammograms, with the inevitable consequence of more abnormal results. It is not known to what extent the negative psychosocial sequelae of mammography might affect follow-up recommendations for additional tests or delay in seeking care for potential cancer symptoms (5). Noncompliance with follow-up recommendations continues to be a problem (25). Moreover, there is no information on the cumulative impact of more than one abnormal mammogram. There is reason to hypothesize that a second or third abnormal result could be especially distressing, but there are no data in this area. The results of the Fine et al. (18) study suggest that better communication is needed throughout the process. This should begin with preparation for the mammogram. Moreover, anything that can be done to minimize the time between follow-up procedures and communication of results to women probably will reduce adverse effects (4,9,26). The impact of brief psychoeducational interventions and other interventions designed to help women cope with the abnormal experience should be investigated. Researchers should test the efficacy of different strategies, not only to communicate abnormal findings, but to help women cope with the anxiety that occurs during the waiting period and thereafter. Only a subset of women are at risk for extreme anxiety, but there must be a mechanism by which to identify them and provide them with the needed support. Lerman et al. (21) demonstrated a 13% increase in mammography adherence with a minimal type of mailed psychoeducational intervention. This is extremely promising and suggests that low-cost, low-intensity interventions may have some value in facilitating effective coping in response to the abnormal mammography experience. Telephone counseling has been used effectively in a number of health-related areas (27) to assist women who have particular difficulty in coping. It is not known whether women in their forties would have different intervention needs than women aged 50 and older. Conclusions The agenda for the study of abnormal mammograms should include the following areas. Research is needed to characterize the impact of abnormal mammograms. Answers to the following questions are needed. What are the psychosocial consequences of abnormal mammography and how long do they last? How does abnormal mammography affect adherence to subsequent mammograms? Are the effects related to the index of suspicion? What is the cumulative impact of more than one abnormal mammogram? Who are the women at most risk for extreme distress? Do women with a family history and/or an identified genetic mutation predisposing them to breast cancer need special attention? What are the direct and indirect costs of abnormal mammograms? Research is needed to improve communication throughout the mammography experience and especially for women with abnormal results. Intervention research also is needed to develop and test cost-effective interventions to aid women in coping with abnormal mammograms. Special interventions may be needed for women who experience extreme distress about the abnormal result. The research should be methodologically rigorous, with adequate power and standardized measures and measurement points. At present, there are more questions than answers. One of the more intriguing questions is why there has been so little inquiry in an area that is of such vital concern. Table 1. Psychological responses to abnormal mammograms Authors   Sample size   Age   Methods   Time of measurement   Results   Bartolucci G, Savron G, Fava GA, Grandi S, Trombini G, Orlandi C. 1989 (7)   50 patients who had a normal thermogram, 20 patients for whom there was an abnormal thermogram that turned out not to be cancer  Group 1: Mean = 38.2 Range = 17-61Group 2: Mean = 48.8 Range = 41-61   Consecutive unselected women attending breast screening clinic in Italy. SAQs. RR not available.  Group 1: Immediately prior to thermography and then 3 to 4 days later, after learning of normal result Group 2: SAQ administered before mammogram, which followed abnormal thermography and 3 to 4 days later, after learning of normal results  Patients showed significant decreases in anxiety (p<.001), depression (p<.001), somatic arousal (p<.01), worry about illness (p<.05), concern about pain (p<.05), and fear of dying (p<.01) after hearing the normal results. There was a further decrease in anxiety and concern about pain when women learned of normal mammogram (p<.05). Thus, the authors noted that the experience entailed significant emotional arousal.  Bull AR, Campbell MJ. 1991 (8)  1125 women  All over age 50  Screening reactions were assessed at invitation, mammogram, attendance at special clinic for abnormal follow-up, and surgical biopsy in the UK. Women at the first stage were selected from six general practices in screening programs. Subsequent normal samples were drawn for the three next stages. SAQs. RR = 76%*  Invitation, mammogram, attendance at follow-up clinic, and biopsy  Significant increase in frequency of BSE occurred as index of abnormality increased (p<.001). After screening, 29/226 practiced BSE 1 or more times per week; 64 had increased BSE and 26 had decreased BSE. No significant differences in anxiety were found between the groups; 10% in abnormal groups said screening had left them more anxious; 10% of biopsy group had increased BSE to more than 1 time per week. Authors concluded that the psychological effects were of note in women who needed biopsy.  Ellman R, Angeli N, Christians A, Moss S, Chaimberlain J, Maguire P. 1989 (4)  733 women  45-71  GHQ administered to 302 women attending routine screening, 300 women attending for follow-up of positive results, and 150 women with breast symptoms that were benign. Women were recruited on a weekly basis from clinics in the UK. RR = 94.7%* (women approached who completed both questionnaires)  At clinic before seeing doctor, women completed SAQ, then 3 months later, questionnaire was administered to women in their homes.  Women in the false positive and symptomatic benign abnormalities groups had significantly greater anxiety scores than those having routine screening (p<.02 and p<.002). 3 months later, the FP and routine group had the same level of anxiety, but this anxiety was significantly decreased among both groups (p<.005, p<.05).  Gram IT, Lund E, Slenker SE. 1990 (9)  126 women with false positives and 152 women with normal exams  40 and older  Women in the Tromso Screening Program, Tromso, Norway, were mailed SAQ six months after screening mammogram. Questionnaires were also sent to non-attenders and a community sample. In-person interviews conducted 18 months following screening. RRs = 79% (study group), 73% (comparison group)  After screening (same time for non-screened women) and 18 months later  29% of women with false positives reported anxiety 18 months after the event compared to 13% of those with negative results (p = .001). 5% described FP as the worst thing they had ever experienced. 18 months later, the majority of FPs reported the same quality of life as those with negative exams. Women's perceptions of the work-up period were longer than those documented in hospital files (p = .05). 63% said that they were anxious compared to 16% in the reference group. 11% in the recall group said that they had less capacity for work until they learned of their results. 44% said that the workup experience had an overall positive impact on their lives.  Gram IT, Slenker SE. 1992 (10)  Negative screens (NS) = 209, False positives = 160, Non-attenders = 178, Population sample = 164  Median = 46 Range = 40-61  As part of the third Tromso, Norway, study, all abnormals who did not have cancer were identified, along with a sample of negative screenees and non-attenders and a random population sample. SAQs. RRs: 84% (screened negatives), 89% (false positives), 38% (non-attenders), 66% (population sample)  After mammography was completed; exact timing not available  Significantly more women in the false positive group than in the NS group reported the mammogram to be unpleasant (26%) or both painful and unpleasant (11%) (p<.01). Among the FP group, women who had been anxious about breast cancer at previous exams were more likely to be anxious at the current mammogram (p<.001).  Lerman C, Trock B, Rimer BK, Boyce A, Jepson C, Engstrom PF. 1991 (11)  121 women with normal findings, 119 with low suspicion mammograms and 68 with high suspicion mammograms but not breast cancer (N = 308)  Mean = 58  Women were selected from an HMO pool of women in Pennsylvania and New Jersey who had recent mammograms and had not been diagnosed with breast cancer. Subjects were interviewed by phone. RR = 85%  3 months from mammogram  47% of women with high suspicion mammograms had mammogram-related anxiety, and 63% had worries about breast cancer. 38% of women said that their worries affected their mood, and 27% said that their daily functioning was affected. 41% of those with high suspicion findings compared to 28% of normals said they were at least somewhat worried about breast cancer. A decrease in concerns about breast cancer decreased chances of subsequent mammography adherence among all groups. Most women had subsequent mammograms on schedule.  Lidbrink E, Levi L, Pettersson I, Rosendahl I, Rutqvist LE, de la Torre B, et al. 1995 (12)  45 women who were recalled for 3-view mammographic exams and did not have breast cancer  NA  36 women were told of normal findings 1 hour after mammograms; the other nine were told one week later. The study, which took place in Sweden, includes not only psychological but also endocrine and immunological measures. SAQs. RR = 98% (volunteered), RR = 92%* (after women with breast cancer excluded)  2 different measurements; immediately after mammogram and three weeks after they were determined free of breast cancer. Long term (6 and 12 months) follow-up on 10 randomly chosen women  The mean mood score was lower at time 1 than time 2 (p<.05); no differences in endocrine or immunologic function were found. Emotion-focused copers had higher cortisol levels than problem-focused copers, suggesting greater stress. The authors speculated that the short waiting period may have attenuated the results.  Sutton S, Saidi G, Bickler G, Hunter J. 1995 (13)  Two overlapping samples. Sample A included 795 women who were due for screening at a mobile unit and returned questionnaires at 2 times. Sample B included 732 women who attended clinic during 3-month period and provided complete data. 306 attenders common to both samples and 100 non-attenders from Sample A were included. Only 24 FPs in all.  Mean = 58  This study had a prospective design with a retrospective analysis of anxiety and was conducted in the UK. SAQs. Sample A RR = 53%* (completed both questionnaires) RR = 27%* (included in analysis) Sample B RR = 84% (provided adequate data) RR = 35%* (included in analysis)  Questionnaires at three points: baseline, screening visit, and nine months later  Main analyses were on 306 attenders and 100 non-attenders. There was no significant difference in anxiety pre- and postscreening. Younger women were significantly more anxious (p<.01). On retrospective analysis, women with false positive results recalled feeling more anxiety at every stage as well as more pain and discomfort.  Swanson V, McIntosh IB, Power KG, Dobson H. 1996 (14)  1285 women  50-64  SAQs were used to assess anxiety, concern about breast problems and other effects on women invited to the UK National Health Service Breast Screening Program. RRs = 49% (women invited for screening), 68% (women attending for mammography)  Baseline and after screening  56% of the women who attended screening reported reduced anxiety as a result of screening, while 13% reported increased anxiety. Women with a family history of breast cancer or breast disease tended to be more worried. Mammography did not increase anxiety among those not previously worried. There was a significant increase in worry and physical, emotional and social dysfunction in the group of women who were recalled (p⩽.05) and assessed at the time of recall.  Authors   Sample size   Age   Methods   Time of measurement   Results   Bartolucci G, Savron G, Fava GA, Grandi S, Trombini G, Orlandi C. 1989 (7)   50 patients who had a normal thermogram, 20 patients for whom there was an abnormal thermogram that turned out not to be cancer  Group 1: Mean = 38.2 Range = 17-61Group 2: Mean = 48.8 Range = 41-61   Consecutive unselected women attending breast screening clinic in Italy. SAQs. RR not available.  Group 1: Immediately prior to thermography and then 3 to 4 days later, after learning of normal result Group 2: SAQ administered before mammogram, which followed abnormal thermography and 3 to 4 days later, after learning of normal results  Patients showed significant decreases in anxiety (p<.001), depression (p<.001), somatic arousal (p<.01), worry about illness (p<.05), concern about pain (p<.05), and fear of dying (p<.01) after hearing the normal results. There was a further decrease in anxiety and concern about pain when women learned of normal mammogram (p<.05). Thus, the authors noted that the experience entailed significant emotional arousal.  Bull AR, Campbell MJ. 1991 (8)  1125 women  All over age 50  Screening reactions were assessed at invitation, mammogram, attendance at special clinic for abnormal follow-up, and surgical biopsy in the UK. Women at the first stage were selected from six general practices in screening programs. Subsequent normal samples were drawn for the three next stages. SAQs. RR = 76%*  Invitation, mammogram, attendance at follow-up clinic, and biopsy  Significant increase in frequency of BSE occurred as index of abnormality increased (p<.001). After screening, 29/226 practiced BSE 1 or more times per week; 64 had increased BSE and 26 had decreased BSE. No significant differences in anxiety were found between the groups; 10% in abnormal groups said screening had left them more anxious; 10% of biopsy group had increased BSE to more than 1 time per week. Authors concluded that the psychological effects were of note in women who needed biopsy.  Ellman R, Angeli N, Christians A, Moss S, Chaimberlain J, Maguire P. 1989 (4)  733 women  45-71  GHQ administered to 302 women attending routine screening, 300 women attending for follow-up of positive results, and 150 women with breast symptoms that were benign. Women were recruited on a weekly basis from clinics in the UK. RR = 94.7%* (women approached who completed both questionnaires)  At clinic before seeing doctor, women completed SAQ, then 3 months later, questionnaire was administered to women in their homes.  Women in the false positive and symptomatic benign abnormalities groups had significantly greater anxiety scores than those having routine screening (p<.02 and p<.002). 3 months later, the FP and routine group had the same level of anxiety, but this anxiety was significantly decreased among both groups (p<.005, p<.05).  Gram IT, Lund E, Slenker SE. 1990 (9)  126 women with false positives and 152 women with normal exams  40 and older  Women in the Tromso Screening Program, Tromso, Norway, were mailed SAQ six months after screening mammogram. Questionnaires were also sent to non-attenders and a community sample. In-person interviews conducted 18 months following screening. RRs = 79% (study group), 73% (comparison group)  After screening (same time for non-screened women) and 18 months later  29% of women with false positives reported anxiety 18 months after the event compared to 13% of those with negative results (p = .001). 5% described FP as the worst thing they had ever experienced. 18 months later, the majority of FPs reported the same quality of life as those with negative exams. Women's perceptions of the work-up period were longer than those documented in hospital files (p = .05). 63% said that they were anxious compared to 16% in the reference group. 11% in the recall group said that they had less capacity for work until they learned of their results. 44% said that the workup experience had an overall positive impact on their lives.  Gram IT, Slenker SE. 1992 (10)  Negative screens (NS) = 209, False positives = 160, Non-attenders = 178, Population sample = 164  Median = 46 Range = 40-61  As part of the third Tromso, Norway, study, all abnormals who did not have cancer were identified, along with a sample of negative screenees and non-attenders and a random population sample. SAQs. RRs: 84% (screened negatives), 89% (false positives), 38% (non-attenders), 66% (population sample)  After mammography was completed; exact timing not available  Significantly more women in the false positive group than in the NS group reported the mammogram to be unpleasant (26%) or both painful and unpleasant (11%) (p<.01). Among the FP group, women who had been anxious about breast cancer at previous exams were more likely to be anxious at the current mammogram (p<.001).  Lerman C, Trock B, Rimer BK, Boyce A, Jepson C, Engstrom PF. 1991 (11)  121 women with normal findings, 119 with low suspicion mammograms and 68 with high suspicion mammograms but not breast cancer (N = 308)  Mean = 58  Women were selected from an HMO pool of women in Pennsylvania and New Jersey who had recent mammograms and had not been diagnosed with breast cancer. Subjects were interviewed by phone. RR = 85%  3 months from mammogram  47% of women with high suspicion mammograms had mammogram-related anxiety, and 63% had worries about breast cancer. 38% of women said that their worries affected their mood, and 27% said that their daily functioning was affected. 41% of those with high suspicion findings compared to 28% of normals said they were at least somewhat worried about breast cancer. A decrease in concerns about breast cancer decreased chances of subsequent mammography adherence among all groups. Most women had subsequent mammograms on schedule.  Lidbrink E, Levi L, Pettersson I, Rosendahl I, Rutqvist LE, de la Torre B, et al. 1995 (12)  45 women who were recalled for 3-view mammographic exams and did not have breast cancer  NA  36 women were told of normal findings 1 hour after mammograms; the other nine were told one week later. The study, which took place in Sweden, includes not only psychological but also endocrine and immunological measures. SAQs. RR = 98% (volunteered), RR = 92%* (after women with breast cancer excluded)  2 different measurements; immediately after mammogram and three weeks after they were determined free of breast cancer. Long term (6 and 12 months) follow-up on 10 randomly chosen women  The mean mood score was lower at time 1 than time 2 (p<.05); no differences in endocrine or immunologic function were found. Emotion-focused copers had higher cortisol levels than problem-focused copers, suggesting greater stress. The authors speculated that the short waiting period may have attenuated the results.  Sutton S, Saidi G, Bickler G, Hunter J. 1995 (13)  Two overlapping samples. Sample A included 795 women who were due for screening at a mobile unit and returned questionnaires at 2 times. Sample B included 732 women who attended clinic during 3-month period and provided complete data. 306 attenders common to both samples and 100 non-attenders from Sample A were included. Only 24 FPs in all.  Mean = 58  This study had a prospective design with a retrospective analysis of anxiety and was conducted in the UK. SAQs. Sample A RR = 53%* (completed both questionnaires) RR = 27%* (included in analysis) Sample B RR = 84% (provided adequate data) RR = 35%* (included in analysis)  Questionnaires at three points: baseline, screening visit, and nine months later  Main analyses were on 306 attenders and 100 non-attenders. There was no significant difference in anxiety pre- and postscreening. Younger women were significantly more anxious (p<.01). On retrospective analysis, women with false positive results recalled feeling more anxiety at every stage as well as more pain and discomfort.  Swanson V, McIntosh IB, Power KG, Dobson H. 1996 (14)  1285 women  50-64  SAQs were used to assess anxiety, concern about breast problems and other effects on women invited to the UK National Health Service Breast Screening Program. RRs = 49% (women invited for screening), 68% (women attending for mammography)  Baseline and after screening  56% of the women who attended screening reported reduced anxiety as a result of screening, while 13% reported increased anxiety. Women with a family history of breast cancer or breast disease tended to be more worried. Mammography did not increase anxiety among those not previously worried. There was a significant increase in worry and physical, emotional and social dysfunction in the group of women who were recalled (p⩽.05) and assessed at the time of recall.  RR = response rate, * = response rate calculated by reviewers; SAQ = self-administered questionnaire; GHQ = general health questionnaire. View Large Table 2. Psychological aspects of the mammography experience Authors   Sample size   Age   Methods   Time of measurement   Results   Baines CJ, To T, Wall C. 1990 (17)  2299 women  40-59 at date of entry  SAQs used to assess attitudes after participation in the Canadian NBSS. After screening was completed, RR = 82%.  At completion of screening  After screening, only 5.4% said they were anxious; 15% said they were neither reassured nor anxious. Of women who reported anxiety, 60% said it was because of abnormal referral.  Fine MK, Rimer BK, Watts P. 1993 (18)  255 women  Mean = 52.8  Interviews with women in Philadelphia right after mammograms. An inception cohort was obtained through radiology centers. RR not available.  Immediately after mammogram  60% of the women said they felt anxious about their mammograms; one-third were quite a bit or extremely anxious. 71% of African-American women were anxious compared to 41% of white women (p<.0001). First time mammograms were more stressful than subsequent mammograms (p = .002). 83% of women with less than a high school education reported anxiety compared with 54% of women who had a high-school education or more (p = .001). 16% of all women were very worried about the result.  Valdimarsdottir HB, Bovbjerg DH, Kash KM, Holland JC, Osborne MP, Miller DG. 1995 (19)  58 women (none with abnormal reports were allowed)  Risk group Mean = 43.1 Compar. group Mean = 39.3  Women with a family history were recruited through a high risk clinic in New York, NY (n = 26). A comparison group was recruited from the community (n = 32). Measures were obtained at baseline and two time points after screening. SAQs. RR = 81%* (high-risk women), 84%* (comparison group, eligible and agreed to participate)  One month after screening  Acute distress was significantly higher prior to mammography as compared to 2 follow-ups (p = .005). The total mood disturbance decreased in the risk group but not in the comparison group (p<.006). Nonspecific psychological distress was higher in the risk group (p = .04). They also had higher levels of intrusive thoughts about breast cancer (p = .009) and avoidant thoughts (p = .006) even one month after normal result.  Walker LG, Cordiner CM, Gilbert FJ, Needham G, Deans HE, Affleck IR, et al. 1994 (20)  1635 women completed questionnaires at both baseline and screening  NA  Women eligible for the national screening program in Scotland completed SAQs before invitation and at screening six weeks later. RR = 89.5% (baseline questionnaires completed)  Prior to invitation and at screening  Anxiety and depression scales were significantly lower at screening than at baseline (p<.002, p<.0001). At screening, 19.9% obtained a clinically significant anxiety score while 5.7% obtained a clinically significant depression score. Some women reported stress-related behavior changes in the week before screening. Sleep, worry, and the ability to concentrate, relax, and feel happy were adversely affected and subjects reported more irritability. However, the proportion of women who reported these changes was modest (from 7% for ability to feel happy to 17.8% for sleeping). Adverse changes were correlated with anxiety and depression.  Authors   Sample size   Age   Methods   Time of measurement   Results   Baines CJ, To T, Wall C. 1990 (17)  2299 women  40-59 at date of entry  SAQs used to assess attitudes after participation in the Canadian NBSS. After screening was completed, RR = 82%.  At completion of screening  After screening, only 5.4% said they were anxious; 15% said they were neither reassured nor anxious. Of women who reported anxiety, 60% said it was because of abnormal referral.  Fine MK, Rimer BK, Watts P. 1993 (18)  255 women  Mean = 52.8  Interviews with women in Philadelphia right after mammograms. An inception cohort was obtained through radiology centers. RR not available.  Immediately after mammogram  60% of the women said they felt anxious about their mammograms; one-third were quite a bit or extremely anxious. 71% of African-American women were anxious compared to 41% of white women (p<.0001). First time mammograms were more stressful than subsequent mammograms (p = .002). 83% of women with less than a high school education reported anxiety compared with 54% of women who had a high-school education or more (p = .001). 16% of all women were very worried about the result.  Valdimarsdottir HB, Bovbjerg DH, Kash KM, Holland JC, Osborne MP, Miller DG. 1995 (19)  58 women (none with abnormal reports were allowed)  Risk group Mean = 43.1 Compar. group Mean = 39.3  Women with a family history were recruited through a high risk clinic in New York, NY (n = 26). A comparison group was recruited from the community (n = 32). Measures were obtained at baseline and two time points after screening. SAQs. RR = 81%* (high-risk women), 84%* (comparison group, eligible and agreed to participate)  One month after screening  Acute distress was significantly higher prior to mammography as compared to 2 follow-ups (p = .005). The total mood disturbance decreased in the risk group but not in the comparison group (p<.006). Nonspecific psychological distress was higher in the risk group (p = .04). They also had higher levels of intrusive thoughts about breast cancer (p = .009) and avoidant thoughts (p = .006) even one month after normal result.  Walker LG, Cordiner CM, Gilbert FJ, Needham G, Deans HE, Affleck IR, et al. 1994 (20)  1635 women completed questionnaires at both baseline and screening  NA  Women eligible for the national screening program in Scotland completed SAQs before invitation and at screening six weeks later. RR = 89.5% (baseline questionnaires completed)  Prior to invitation and at screening  Anxiety and depression scales were significantly lower at screening than at baseline (p<.002, p<.0001). At screening, 19.9% obtained a clinically significant anxiety score while 5.7% obtained a clinically significant depression score. Some women reported stress-related behavior changes in the week before screening. Sleep, worry, and the ability to concentrate, relax, and feel happy were adversely affected and subjects reported more irritability. However, the proportion of women who reported these changes was modest (from 7% for ability to feel happy to 17.8% for sleeping). Adverse changes were correlated with anxiety and depression.  RR = response rate; * = response rate calculated by reviewers; SAQ = self-administered questionnaire. View Large Support for preparation of this manuscript was provided by NCI funded grants 1R01CA63782 and 1PO1CA72099. Thanks are due to Steven Lewis for assistance with table preparation and Shirley Howard for word processing. References (1) Dawson DA, Thompson GB. Breast cancer risk factors and screening: United States, 1987. Vital Health Stat  [10], 1990: 172, 1-60. Google Scholar (2) Breen N, Kessler L. Trends in cancer screening—United States, 1987 and 1992. MMWR Morb Mortal Wkly Rep  1995; 45: 57-61. Google Scholar (3) Brown ML, Houn F, Sickles EA, Kessler LG. Screening mammography in community practice: positive predictive value of abnormal findings and yield of follow-up diagnostic procedures. AJR Am J Roengenol  1995; 165: 1373-7. Google Scholar (4) Ellman R, Angeli N, Christians A, Moss S, Chamberlain J, Maguire P. Psychiatric morbidity associated with screening for breast cancer. Br J Cancer  1989; 60: 781-4. Google Scholar (5) Lerman C, Rimer BK, Engstrom PF. Cancer risk notification: psychosocial and ethical implications. J Clin Oncol  1991; 9: 1275-82. Google Scholar (6) Paskett E, Rimer BK. Psychosocial effects of abnormal Pap tests and mammograms: a review. J Womens Health  1995; 4: 73-82. Google Scholar (7) Bartolucci G, Savron G, Fava GA, Grandi S, Trombini G, Orlandi C. Psychological reactions to thermography and mammography. Stress Med  1989 ; 5: 195-9. Google Scholar (8) Bull AR, Campbell MJ. Assessment of the psychological impact of a breast screening programme. Br J Radiol  1991; 64: 510-5. Google Scholar (9) Gram IT, Lund E, Slenker SE. Quality of life following a false positive mammogram. Br J Cancer 1990; 62; 1018-22. Google Scholar (10) Gram IT, Slenker SE. Cancer anxiety and attitudes toward mammography among screening attenders, nonattenders, and women never invited. Am J Public Health  1992; 82: 249-51. Google Scholar (11) Lerman C, Trock B, Rimer BK, Boyce A, Jepson C, Engstrom PF. Psychological and behavioral implications of abnormal mammograms. Ann Intern Med  1991; 114: 657-61. Google Scholar (12) Lidbrink E, Levi L, Pettersson I, Rosendahl I, Rutqvist LE, de la Torre B, et al. Single-view screening mammography: psychological, endocrine and immunological effects of recalling for a complete three-view examination. Eur J Cancer  1995; 31A: 932-3. Google Scholar (13) Sutton S, Saidi G, Bickler G, Hunter J. Does routine screening for breast cancer raise anxiety? Results from a three wave prospective study in England. J Epidemiol Community Health  1995; 49: 413-8. Google Scholar (14) Swanson V, McIntosh IB, Power KG, Dobson H. The psychological effects of breast screening in terms of patients' perceived health anxieties. Br J Clin Pract  1996; 50: 129-35. Google Scholar (15) Epstein SA, Lin TH, Audrain J, Stefanek M, Rimer B, Lerman C. Excessive breast self-examination among first-degree relatives of newly diagnosed breast cancer patients. High Risk Breast Cancer Consortium. Psychosomatics  1997; 38: 253-61. Google Scholar (16) Lerman C, Trock B, Rimer BK, Jepson C, Brody D, Boyce A. Psychological side effects of breast cancer screening. Health Psychol  1991; 10: 259-67. Google Scholar (17) Baines CJ, To T, Wall C. Women's attitudes to screening after participation in the National Breast Screening Study. A questionnaire survey. Cancer  1990; 65: 1663-9. Google Scholar (18) Fine MK, Rimer BK, Watts P. Women's responses to the mammography experience. J Am Board Fam Pract  1993; 6: 546-55. Google Scholar (19) Valdimarsdottir HB, Bovbjerg DH, Kash KM, Holland JC, Osborne MP, Miller DG. Psychological distress in women with a familial risk of breast cancer. Psychooncology  1995; 4: 133-41. Google Scholar (20) Walker LG, Cordiner CM, Gilbert FJ, Needham G, Deans HE, Affleck IR, et al. How distressing is attendance for routine breast screening? Psychooncology  1994; 3: 299-304. Google Scholar (21) Lerman C, Ross E, Boyce A, Gorchov P, McLaughlin R, Rimer BK, et al. The impact of mailed psychoeducational materials to women with abnormal mammograms. Am J Public Health  1992; 82: 729-30. Google Scholar (22) Scudds RJ, Pederson LL. Phone, paper and pencil, in person: Methods of data collection for the `90s. Am J Health Behav  1996; 20: 443-7. Google Scholar (23) Lerman C, Daly M, Sands C, Balshem A, Lustbader E, Heggan T, et al. Mammography adherence and psychological distress among women at risk for breast cancer. J Natl Cancer Inst  1993; 85: 1074-80. Google Scholar (24) Lerman C, Lustbader E, Rimer B, Daly M, Miller S, Sands C, et al. Effects of individualized breast cancer risk counseling: a randomised trial. J Natl Cancer Inst  1995; 87: 286-92. Google Scholar (25>) McCarthy BD, Yood MU, Boohaker EA, Ward RE, Rebner M, Johnson CC. Inadequate follow-up of abnormal mammograms. Am J Prev Med  1996; 12: 282-8. Google Scholar (26) Cardenosa G, Eklund GW. Rate of compliance with recommendations for additional mammographic views and biopsies. Radiology  1991; 181: 359-61. Google Scholar (27) King E, Rimer BK, Seay J, Balshem A, Engstrom PF. Promoting mammography use through progressive interventions: is it effective? Am J Public Health  1994; 84: 104-6. Google Scholar Oxford University Press http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JNCI Monographs Oxford University Press

The Psychosocial Consequences of Mammography

JNCI Monographs , Volume 1997 (22) – Jan 1, 1997

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References (28)

Publisher
Oxford University Press
Copyright
Oxford University Press
ISSN
1052-6773
eISSN
1745-6614
DOI
10.1093/jncimono/1997.22.131
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See Article on Publisher Site

Abstract

Abstract Increasing numbers of mammograms being performed in the United States will be accompanied inevitably by an increasing number of false positives. According to reliable estimates from a survey of radiology facilities, U.S. women in their forties experience close to one million false positive mammograms every year. To determine the impact of false positive mammograms and the broader psychological impact of mammography, we conducted literature searches of Medline, CancerLit, and PsycInfo. We identified nine studies examining the impact of false positive mammograms. Most found short-term increases in such psychological measures as anxiety, distress, and intrusive thoughts. One study found substantial effects on these measures three months after an abnormal mammogram. Another study found an 18-month impact on anxiety. Few studies have used behavioral outcomes, but one reported overpractice of breast self-exam among women who had received false positive results. Another found no reduction in adherence to mammography among women who have had an abnormal test. The more general mammography literature suggests that many women are anxious about mammography before the exam; women with lower levels of education, African Americans, and women with a family history of breast cancer may be more vulnerable to distress. Unfortunately, this literature suffers major limitations, such as small sample sizes, inconsistent and sometimes inappropriate measures, variations in the time frames for measurement, few studies with women aged 40-49, and a paucity of U.S. research. More research is needed to characterize at-risk women and to test interventions designed to reduce the negative impact of abnormal mammograms. Improved communication is also needed throughout the entire mammography process. Mammography use has increased dramatically in the past 10 years. In 1987, the National Health Interview Survey (NHIS) found that only about one-third of U.S. women had ever had a mammogram, and only 17% had had one in the preceding year (1). By the 1992 NHIS, 70% of women aged 40-49 reported having had a mammogram, 36% of U.S. women reported having been screened recently, and 35% said they had had one in the last year (2). These increases carry an inevitable burden of false positives and false negatives. The number of false positive mammograms received by U.S. women may be as high as 2.75 million, based on the 11% false positive rate found in a survey of community facilities (3) and an estimate of about 25 million screening exams performed annually in the United States (Fletcher S, personal communication). If about 35% of the total mammograms performed each year, based on NHIS data (2), are in women aged 40-49, and 11% are false positives (3), 960,000 abnormal mammograms could occur annually in this age group. Thus, it is appropriate to consider both the negative and positive consequences of receiving an abnormal result. These consequences could be factored into the overall mammography benefit-risk ratio for women of different ages. Studies have examined outcomes of the general mammography experience, such as anxiety, distress, depression, excessive fear of cancer, subsequent practice of breast self-exam (BSE), and adherence to recommended mammography schedules or other follow-up procedures (4,5,6). Some studies have focused more specifically on the psychological sequelae of abnormal mammograms. One concern is that the experience of an abnormal mammogram may not only cause psychological reactions, such as severe anxiety and distress, but also could act as a negative reinforcer deterring women from subsequent mammograms. Yet for a field as large as breast cancer screening, there has been surprisingly little study of the psychological consequences of mammography, especially compared to the amount of research on the psychosocial barriers to mammography. Moreover, most of the studies have been conducted in Europe, leading to an uncertain ability to generalize results to the United States. This review focuses on the psychosocial consequences of abnormal mammograms. Some consideration of the more general mammography experience is presented in order to place reactions to abnormal mammograms in context. Where published, reports about interventions to help women cope with the abnormal mammography experience also are included. The larger issue of compliance with recommended follow-up for abnormal mammograms, while important, is beyond the scope of this report. The literature on the psychosocial consequences of abnormal exams is extremely limited. Three separate searches of Medline, CancerLit, and PsycInfo between October 1996 and December 1996 identified fewer than 30 discrete articles, some of which were anecdotal reports or tangential to the topic. We also wrote to investigators who are conducting research in this area to identify in-press articles—none were forthcoming. This review focuses on published reports about responses to abnormal mammograms and about the psychosocial consequences of mammograms. We included only articles that provided data and were not exclusively case reports, single group analyses, or exploratory studies. Because of the relatively undeveloped nature of the field, nonexperimental studies and cross-sectional surveys were included. However, anecdotal and case reports were excluded. Psychological Impact of an Abnormal Mammogram As Paskett and Rimer (6) have discussed, there can be several consequences of abnormal medical tests. These include labeling, psychologic distress, and noncompliance with evaluation or treatment recommendations. Most of the published research has focused on psychological reactions, such as intrusive thoughts, worry, and distress. Nine published reports (summarized in Table 11) have examined various aspects of the abnormal mammogram experience (4,7,8,9,10,11,12,13,14). There have been other reports, but many of these reports are largely exploratory, and the results are limited by small samples, often collected in a nonrandom manner. Most of the studies on which we focus have included a range of ages; therefore, the results cannot be examined separately for women aged 40-49. The outcomes have included various measures of distress, anxiety, hostility, effect on BSE practice, and impact on adherence to mammography. One study also obtained endocrine and immunologic measures. This first group of studies includes only those empirical reports in which at least some subset of the sample received abnormal results. Women with breast cancer were excluded from all studies except the report by Ellman, Angeli, Christians, et al. (4). Two studies (7,12) found short-term negative emotional reactions in women who have had abnormal thermograms or mammograms, but the sample sizes were quite small. Bull and Campbell (8) sent questionnaires to 750 women prior to breast cancer screening and subsequently to women with normal findings and those who required follow-up procedures as a result of abnormal exams. There was no increase in general levels of depression or anxiety in any of the groups; however, there was a significant increase in the overpractice of BSE among women who required special assessments, especially biopsies, as a consequence of abnormal exams. This is of concern, since overpractice of BSE may diminish the ability to detect subtle changes in breast tissue (15). Ellman et al. (4) compared different subgroups of women in a sample of 733 women in the UK Trial of Early Detection of Breast Cancer. Three months after attendance at a recall clinic, the same proportion (19%) of women with false positive results and with routine screening experienced anxiety. Women with symptomatic benign conditions had anxiety scores that were elevated three months later. Although there was a short-term increase in anxiety among the false positive group, it was not sustained. Sutton, Saidi, Bickler, et al. (13) analyzed data from the National Health Service Breast Screening Programme on 306 attenders and 100 nonattenders; however, only 24 women were in the false positive category. Anxiety was highest at baseline, but, in general, the women were not overly anxious. On retrospective analysis, women with false positives recalled feeling more anxious than negative screenees. Another examination of women in this program found significant increases in worry, and physical, emotional, and social dysfunction was found among the women who were recalled. Distress was higher in women with a personal history of breast problems or a family history of breast cancer (14). The false positive experience may affect women's perceptions about mammography and, thus, make them anxious about future exams. In one of the larger studies (nearly 300 women), Gram, Lund, and Slenker (9) and Gram and Slenker (10) found that women in the Tromso, Norway, screening program who had false positives were retrospectively more likely than negative screenees to rate mammography as unpleasant or both painful and unpleasant. Moreover, they found the effects on increased anxiety to be long lasting: 18 months after screening, 29% of women with false positives reported anxiety compared to 13% of those with negative results. A small proportion (5%) of the women with false positives described the experience as the worst in their lives. About 11% said that their capacity for work was affected during the waiting period, but 44% said that the abnormal mammography experience had an overall positive impact on their lives. Lerman and colleagues (11,16) evaluated women's psychological responses to abnormal mammograms and the effect on mammography adherence. The authors assessed psychological responses and subsequent adherence to mammography among 300 women in an Independent Practice Association-model health maintenance organization (HMO) who had had mammograms with varying levels of suspicion. The degree of mammogram suspicion was significantly related to the strength of the adverse outcome. Women with more suspicious abnormal mammograms reported significantly elevated levels of distress, and their mammography-related anxiety and breast cancer worries interfered with their moods and functioning: in the high-suspicion group, 47% had mammography-related anxiety and 63% had worries about breast cancer; such worries affected the moods (38%) and daily functioning (27%) of these women. Women with high and low levels of impairment were less likely to practice BSE than those with moderate impairment. Intentions to get mammograms in the next year increased directly with the level of mammogram suspicion. Most women with abnormal mammograms obtained their next mammogram on schedule. These data suggest that even when the results of an abnormal mammogram are shown not to be cancer, some women experience negative sequelae. However, this study was conducted among women aged 50-74, and it is not clear to what extent the results would be similar among women aged 40-49. Nevertheless, this is one of the largest and most well-controlled studies of the abnormal mammography experience to date. Overall, the studies indicate that false positives have a moderate but reasonably consistent effect on such psychological measures as anxiety, worry, and distress. The majority of studies found statistically significant short-term increases in worry and/or distress. In several studies, about one-fifth or more of the women reported a negative effect of the abnormal mammogram on their daily functioning. Few studies have included longer-term impact measures. Lerman, Trock, Rimer, et al. (11,16) found a substantial impact at three months after the abnormal mammogram result. Gram and Slenker (10) found significant anxiety 18 months after an abnormal result. In one study, the false positive event seemed to cause overpractice of BSE. Again, few studies have included behavioral outcomes. It is not possible to determine from these studies the impact of abnormal mammograms or the duration of negative sequelae. Psychosocial Consequences of Mammography A small body of literature includes studies of the psychological consequences of mammography in general. These studies are summarized in Table 22 (17,18,19,20). We did not consider the larger literature that is based primarily on retrospective accounts of the mammography experience. Fine, Rimer, and Watts (18) interviewed 250 women immediately after they had mammograms: 60% of the women were anxious about having a mammogram, and 20% were extremely anxious. African-American women were significantly more anxious than white women, and those with a high-school education or less were significantly more anxious than those with more education. Some of this anxiety seemed to be due to a lack of information about what to expect. Baines, To, and Wall (17) assessed reactions to mammography among active respondents as part of the Canadian National Breast Screening Study (NBSS). Only 5.4% of the women said they were anxious about their mammograms, but the majority of those who responded this way said it was because of an abnormal referral. In a large sample (over 2,000 women), Walker, Cordiner, Gilbert, et al. (20) found that prior to screening, nearly 20% of the women had clinically significant anxiety scores and 6% had clinically significant depression scores. These scores decreased significantly between baseline and screening. Some women reported such adverse effects as difficulty sleeping, inability to concentrate, and inability to relax or feel happy during the week before screening. One study (19) with a small sample (n = 53) indicated that women with a high familial risk of breast cancer had significantly higher levels of both acute and nonspecific distress and avoidant and intrusive thoughts after mammography when compared to normal-risk women. These results persisted one month after the normal report. The impact of family or other risk factors on response to mammography should be investigated further, since these women are likely to be advised to start mammography at a younger age. Thus, the evidence from these studies suggests that a substantial proportion (20%-60%) of women are anxious about mammography before their exams; in some cases, the evidence was clinically significant. This baseline level of anxiety, then, could be exacerbated by abnormal results. Some women seem to be more adversely affected than others by the mammography experience. Among those more vulnerable to distress were African-American women, those with lower levels of education, and those with a family history of breast cancer. These may be the same women who will have more negative reactions to the abnormal mammography result, but more information is needed. Many women clearly would benefit from better preparation. Fine et al. (18), for example, found that anxiety was higher in women who felt less prepared for the mammogram. Interventions to Reduce Negative Psychosocial Consequences and to Improve Coping There has been scant research on interventions designed to reduce anxiety and distress and to improve coping after an abnormal result. In one of the few studies in this area, Lerman, Ross, Boyce, et al. (21) sent women in an experimental condition a booklet designed to improve adherence to the subsequent mammogram following an abnormal test. The brief psychoeducational booklet resulted in a statistically significant 13% increase in adherence to the subsequent mammogram. Discussion The research base on the psychosocial consequences of mammography, in general, and abnormal mammograms, in particular, is extremely limited. There are major methodological deficiencies among the published research studies. The investigators have studied different age groups and different time intervals and used a range of measures, measurements, and outcomes. In many cases, the sample sizes were so small as to render the results primarily exploratory. Some investigators have assessed responses immediately after the abnormal experience; others have used different time points. There is little consistency in the use of measures, and the selections rarely have been justified. Only two of the above-mentioned studies—those by Bull and Campbell (8) and by Walker et al. (20)—utilized a common measure to assess the psychosocial impact of mammography, and their samples were quite different. These studies incorporated the Hospital Anxiety and Depression Scale (HADS) to assess the effect of mammography on depression and anxiety. Overall, women attending for routine mammography experienced mean reductions in anxiety of 2.7% (20) and 10.9% (8) following the mammogram. Corresponding reductions in depression were 10.3% (20) and 15.4% (8). The lack of a common set of measures across studies makes it inappropriate to conduct formal meta-analyses. Without a standardized measure, such as an effect size, it is difficult to compare the results of one study to another. Moreover, often the measures themselves are inappropriate. For example, general distress may not be as sensitive a measure as screening-related distress (14). Different levels of support have been provided to help women cope with the abnormal experience, thus serving as a potential confounder. Women's reactions also may be affected by how the results are communicated. The generalizability of results may also be limited by the fact that most of the studies have been conducted in European countries where health care is provided free by the government, invitations are issued for mammography, and psychosocial support seems more likely to be provided. Thus, it is difficult to reach clear conclusions about the impact of mammography or abnormal mammograms on such outcomes as anxiety, distress, or adherence to recommended breast screening. Among some women, there does seem to be short-term distress, and at least one study shows that the level of distress is related to the index of mammogram suspicion. The effects are relatively modest but not insignificant, with most studies indicating, not surprisingly, a significant increase in anxiety among women with abnormal results. While the majority of women do not suffer short-term harm, there seems to be a small group of women who are affected adversely. As Gram et al. (9) showed, the increased level of anxiety persisted 18 months after screening. Thus, the sequelae seem to be largely psychological—effects on such variables as worry, distress, and intrusive thoughts. To date, there is no evidence of a negative impact on subsequent mammography adherence, but only one study included this as a major outcome. There is a need for rigorous research that includes sufficient numbers of women aged 40-49. Sample sizes should be adequate enough to conduct subgroup analyses by race and age. It would be useful to determine how long any negative effects persist after an abnormal mammogram. Research should be conducted in the United States, where cost may be a factor in response to the abnormal experience and where there is not a national health care system. Ideally, some studies would use telephone or in-person interviews to avoid the limitations of self-administered questionnaires (22). It would be helpful to obtain information about whether women missed time from work or usual activities in order to calculate the indirect costs and impacts of abnormal mammograms on women's lives. It is critical to characterize the women who may be more likely to suffer adverse effects. As Swanson, McIntosh, Power, et al. (14) caution, it is important to recognize the diversity of responses when examining the impact of screening programs. Considering the effect on larger populations may mask substantial subgroup differences. If women at high risk for problems in coping can be identified, they can be provided with intervention in a proactive manner. There is some suggestion that women with a strong family history may be affected more negatively by an abnormal mammogram (14,19), but there are few data. Lerman, Daly, Sands, et al. (23) found an inverse association between psychological distress and family history among women with a family history of breast cancer. Lerman, Lustbader, Rimer, et al. (24) also found that high-risk women who were very anxious did not benefit from a risk-counseling program. So, at least among some women, there is reason for concern. Clearly, anxiety can interfere with learning. More investigation of this group is essential, since the current activity in genetic testing for cancer susceptibility is likely to result in more younger women having mammograms, with the inevitable consequence of more abnormal results. It is not known to what extent the negative psychosocial sequelae of mammography might affect follow-up recommendations for additional tests or delay in seeking care for potential cancer symptoms (5). Noncompliance with follow-up recommendations continues to be a problem (25). Moreover, there is no information on the cumulative impact of more than one abnormal mammogram. There is reason to hypothesize that a second or third abnormal result could be especially distressing, but there are no data in this area. The results of the Fine et al. (18) study suggest that better communication is needed throughout the process. This should begin with preparation for the mammogram. Moreover, anything that can be done to minimize the time between follow-up procedures and communication of results to women probably will reduce adverse effects (4,9,26). The impact of brief psychoeducational interventions and other interventions designed to help women cope with the abnormal experience should be investigated. Researchers should test the efficacy of different strategies, not only to communicate abnormal findings, but to help women cope with the anxiety that occurs during the waiting period and thereafter. Only a subset of women are at risk for extreme anxiety, but there must be a mechanism by which to identify them and provide them with the needed support. Lerman et al. (21) demonstrated a 13% increase in mammography adherence with a minimal type of mailed psychoeducational intervention. This is extremely promising and suggests that low-cost, low-intensity interventions may have some value in facilitating effective coping in response to the abnormal mammography experience. Telephone counseling has been used effectively in a number of health-related areas (27) to assist women who have particular difficulty in coping. It is not known whether women in their forties would have different intervention needs than women aged 50 and older. Conclusions The agenda for the study of abnormal mammograms should include the following areas. Research is needed to characterize the impact of abnormal mammograms. Answers to the following questions are needed. What are the psychosocial consequences of abnormal mammography and how long do they last? How does abnormal mammography affect adherence to subsequent mammograms? Are the effects related to the index of suspicion? What is the cumulative impact of more than one abnormal mammogram? Who are the women at most risk for extreme distress? Do women with a family history and/or an identified genetic mutation predisposing them to breast cancer need special attention? What are the direct and indirect costs of abnormal mammograms? Research is needed to improve communication throughout the mammography experience and especially for women with abnormal results. Intervention research also is needed to develop and test cost-effective interventions to aid women in coping with abnormal mammograms. Special interventions may be needed for women who experience extreme distress about the abnormal result. The research should be methodologically rigorous, with adequate power and standardized measures and measurement points. At present, there are more questions than answers. One of the more intriguing questions is why there has been so little inquiry in an area that is of such vital concern. Table 1. Psychological responses to abnormal mammograms Authors   Sample size   Age   Methods   Time of measurement   Results   Bartolucci G, Savron G, Fava GA, Grandi S, Trombini G, Orlandi C. 1989 (7)   50 patients who had a normal thermogram, 20 patients for whom there was an abnormal thermogram that turned out not to be cancer  Group 1: Mean = 38.2 Range = 17-61Group 2: Mean = 48.8 Range = 41-61   Consecutive unselected women attending breast screening clinic in Italy. SAQs. RR not available.  Group 1: Immediately prior to thermography and then 3 to 4 days later, after learning of normal result Group 2: SAQ administered before mammogram, which followed abnormal thermography and 3 to 4 days later, after learning of normal results  Patients showed significant decreases in anxiety (p<.001), depression (p<.001), somatic arousal (p<.01), worry about illness (p<.05), concern about pain (p<.05), and fear of dying (p<.01) after hearing the normal results. There was a further decrease in anxiety and concern about pain when women learned of normal mammogram (p<.05). Thus, the authors noted that the experience entailed significant emotional arousal.  Bull AR, Campbell MJ. 1991 (8)  1125 women  All over age 50  Screening reactions were assessed at invitation, mammogram, attendance at special clinic for abnormal follow-up, and surgical biopsy in the UK. Women at the first stage were selected from six general practices in screening programs. Subsequent normal samples were drawn for the three next stages. SAQs. RR = 76%*  Invitation, mammogram, attendance at follow-up clinic, and biopsy  Significant increase in frequency of BSE occurred as index of abnormality increased (p<.001). After screening, 29/226 practiced BSE 1 or more times per week; 64 had increased BSE and 26 had decreased BSE. No significant differences in anxiety were found between the groups; 10% in abnormal groups said screening had left them more anxious; 10% of biopsy group had increased BSE to more than 1 time per week. Authors concluded that the psychological effects were of note in women who needed biopsy.  Ellman R, Angeli N, Christians A, Moss S, Chaimberlain J, Maguire P. 1989 (4)  733 women  45-71  GHQ administered to 302 women attending routine screening, 300 women attending for follow-up of positive results, and 150 women with breast symptoms that were benign. Women were recruited on a weekly basis from clinics in the UK. RR = 94.7%* (women approached who completed both questionnaires)  At clinic before seeing doctor, women completed SAQ, then 3 months later, questionnaire was administered to women in their homes.  Women in the false positive and symptomatic benign abnormalities groups had significantly greater anxiety scores than those having routine screening (p<.02 and p<.002). 3 months later, the FP and routine group had the same level of anxiety, but this anxiety was significantly decreased among both groups (p<.005, p<.05).  Gram IT, Lund E, Slenker SE. 1990 (9)  126 women with false positives and 152 women with normal exams  40 and older  Women in the Tromso Screening Program, Tromso, Norway, were mailed SAQ six months after screening mammogram. Questionnaires were also sent to non-attenders and a community sample. In-person interviews conducted 18 months following screening. RRs = 79% (study group), 73% (comparison group)  After screening (same time for non-screened women) and 18 months later  29% of women with false positives reported anxiety 18 months after the event compared to 13% of those with negative results (p = .001). 5% described FP as the worst thing they had ever experienced. 18 months later, the majority of FPs reported the same quality of life as those with negative exams. Women's perceptions of the work-up period were longer than those documented in hospital files (p = .05). 63% said that they were anxious compared to 16% in the reference group. 11% in the recall group said that they had less capacity for work until they learned of their results. 44% said that the workup experience had an overall positive impact on their lives.  Gram IT, Slenker SE. 1992 (10)  Negative screens (NS) = 209, False positives = 160, Non-attenders = 178, Population sample = 164  Median = 46 Range = 40-61  As part of the third Tromso, Norway, study, all abnormals who did not have cancer were identified, along with a sample of negative screenees and non-attenders and a random population sample. SAQs. RRs: 84% (screened negatives), 89% (false positives), 38% (non-attenders), 66% (population sample)  After mammography was completed; exact timing not available  Significantly more women in the false positive group than in the NS group reported the mammogram to be unpleasant (26%) or both painful and unpleasant (11%) (p<.01). Among the FP group, women who had been anxious about breast cancer at previous exams were more likely to be anxious at the current mammogram (p<.001).  Lerman C, Trock B, Rimer BK, Boyce A, Jepson C, Engstrom PF. 1991 (11)  121 women with normal findings, 119 with low suspicion mammograms and 68 with high suspicion mammograms but not breast cancer (N = 308)  Mean = 58  Women were selected from an HMO pool of women in Pennsylvania and New Jersey who had recent mammograms and had not been diagnosed with breast cancer. Subjects were interviewed by phone. RR = 85%  3 months from mammogram  47% of women with high suspicion mammograms had mammogram-related anxiety, and 63% had worries about breast cancer. 38% of women said that their worries affected their mood, and 27% said that their daily functioning was affected. 41% of those with high suspicion findings compared to 28% of normals said they were at least somewhat worried about breast cancer. A decrease in concerns about breast cancer decreased chances of subsequent mammography adherence among all groups. Most women had subsequent mammograms on schedule.  Lidbrink E, Levi L, Pettersson I, Rosendahl I, Rutqvist LE, de la Torre B, et al. 1995 (12)  45 women who were recalled for 3-view mammographic exams and did not have breast cancer  NA  36 women were told of normal findings 1 hour after mammograms; the other nine were told one week later. The study, which took place in Sweden, includes not only psychological but also endocrine and immunological measures. SAQs. RR = 98% (volunteered), RR = 92%* (after women with breast cancer excluded)  2 different measurements; immediately after mammogram and three weeks after they were determined free of breast cancer. Long term (6 and 12 months) follow-up on 10 randomly chosen women  The mean mood score was lower at time 1 than time 2 (p<.05); no differences in endocrine or immunologic function were found. Emotion-focused copers had higher cortisol levels than problem-focused copers, suggesting greater stress. The authors speculated that the short waiting period may have attenuated the results.  Sutton S, Saidi G, Bickler G, Hunter J. 1995 (13)  Two overlapping samples. Sample A included 795 women who were due for screening at a mobile unit and returned questionnaires at 2 times. Sample B included 732 women who attended clinic during 3-month period and provided complete data. 306 attenders common to both samples and 100 non-attenders from Sample A were included. Only 24 FPs in all.  Mean = 58  This study had a prospective design with a retrospective analysis of anxiety and was conducted in the UK. SAQs. Sample A RR = 53%* (completed both questionnaires) RR = 27%* (included in analysis) Sample B RR = 84% (provided adequate data) RR = 35%* (included in analysis)  Questionnaires at three points: baseline, screening visit, and nine months later  Main analyses were on 306 attenders and 100 non-attenders. There was no significant difference in anxiety pre- and postscreening. Younger women were significantly more anxious (p<.01). On retrospective analysis, women with false positive results recalled feeling more anxiety at every stage as well as more pain and discomfort.  Swanson V, McIntosh IB, Power KG, Dobson H. 1996 (14)  1285 women  50-64  SAQs were used to assess anxiety, concern about breast problems and other effects on women invited to the UK National Health Service Breast Screening Program. RRs = 49% (women invited for screening), 68% (women attending for mammography)  Baseline and after screening  56% of the women who attended screening reported reduced anxiety as a result of screening, while 13% reported increased anxiety. Women with a family history of breast cancer or breast disease tended to be more worried. Mammography did not increase anxiety among those not previously worried. There was a significant increase in worry and physical, emotional and social dysfunction in the group of women who were recalled (p⩽.05) and assessed at the time of recall.  Authors   Sample size   Age   Methods   Time of measurement   Results   Bartolucci G, Savron G, Fava GA, Grandi S, Trombini G, Orlandi C. 1989 (7)   50 patients who had a normal thermogram, 20 patients for whom there was an abnormal thermogram that turned out not to be cancer  Group 1: Mean = 38.2 Range = 17-61Group 2: Mean = 48.8 Range = 41-61   Consecutive unselected women attending breast screening clinic in Italy. SAQs. RR not available.  Group 1: Immediately prior to thermography and then 3 to 4 days later, after learning of normal result Group 2: SAQ administered before mammogram, which followed abnormal thermography and 3 to 4 days later, after learning of normal results  Patients showed significant decreases in anxiety (p<.001), depression (p<.001), somatic arousal (p<.01), worry about illness (p<.05), concern about pain (p<.05), and fear of dying (p<.01) after hearing the normal results. There was a further decrease in anxiety and concern about pain when women learned of normal mammogram (p<.05). Thus, the authors noted that the experience entailed significant emotional arousal.  Bull AR, Campbell MJ. 1991 (8)  1125 women  All over age 50  Screening reactions were assessed at invitation, mammogram, attendance at special clinic for abnormal follow-up, and surgical biopsy in the UK. Women at the first stage were selected from six general practices in screening programs. Subsequent normal samples were drawn for the three next stages. SAQs. RR = 76%*  Invitation, mammogram, attendance at follow-up clinic, and biopsy  Significant increase in frequency of BSE occurred as index of abnormality increased (p<.001). After screening, 29/226 practiced BSE 1 or more times per week; 64 had increased BSE and 26 had decreased BSE. No significant differences in anxiety were found between the groups; 10% in abnormal groups said screening had left them more anxious; 10% of biopsy group had increased BSE to more than 1 time per week. Authors concluded that the psychological effects were of note in women who needed biopsy.  Ellman R, Angeli N, Christians A, Moss S, Chaimberlain J, Maguire P. 1989 (4)  733 women  45-71  GHQ administered to 302 women attending routine screening, 300 women attending for follow-up of positive results, and 150 women with breast symptoms that were benign. Women were recruited on a weekly basis from clinics in the UK. RR = 94.7%* (women approached who completed both questionnaires)  At clinic before seeing doctor, women completed SAQ, then 3 months later, questionnaire was administered to women in their homes.  Women in the false positive and symptomatic benign abnormalities groups had significantly greater anxiety scores than those having routine screening (p<.02 and p<.002). 3 months later, the FP and routine group had the same level of anxiety, but this anxiety was significantly decreased among both groups (p<.005, p<.05).  Gram IT, Lund E, Slenker SE. 1990 (9)  126 women with false positives and 152 women with normal exams  40 and older  Women in the Tromso Screening Program, Tromso, Norway, were mailed SAQ six months after screening mammogram. Questionnaires were also sent to non-attenders and a community sample. In-person interviews conducted 18 months following screening. RRs = 79% (study group), 73% (comparison group)  After screening (same time for non-screened women) and 18 months later  29% of women with false positives reported anxiety 18 months after the event compared to 13% of those with negative results (p = .001). 5% described FP as the worst thing they had ever experienced. 18 months later, the majority of FPs reported the same quality of life as those with negative exams. Women's perceptions of the work-up period were longer than those documented in hospital files (p = .05). 63% said that they were anxious compared to 16% in the reference group. 11% in the recall group said that they had less capacity for work until they learned of their results. 44% said that the workup experience had an overall positive impact on their lives.  Gram IT, Slenker SE. 1992 (10)  Negative screens (NS) = 209, False positives = 160, Non-attenders = 178, Population sample = 164  Median = 46 Range = 40-61  As part of the third Tromso, Norway, study, all abnormals who did not have cancer were identified, along with a sample of negative screenees and non-attenders and a random population sample. SAQs. RRs: 84% (screened negatives), 89% (false positives), 38% (non-attenders), 66% (population sample)  After mammography was completed; exact timing not available  Significantly more women in the false positive group than in the NS group reported the mammogram to be unpleasant (26%) or both painful and unpleasant (11%) (p<.01). Among the FP group, women who had been anxious about breast cancer at previous exams were more likely to be anxious at the current mammogram (p<.001).  Lerman C, Trock B, Rimer BK, Boyce A, Jepson C, Engstrom PF. 1991 (11)  121 women with normal findings, 119 with low suspicion mammograms and 68 with high suspicion mammograms but not breast cancer (N = 308)  Mean = 58  Women were selected from an HMO pool of women in Pennsylvania and New Jersey who had recent mammograms and had not been diagnosed with breast cancer. Subjects were interviewed by phone. RR = 85%  3 months from mammogram  47% of women with high suspicion mammograms had mammogram-related anxiety, and 63% had worries about breast cancer. 38% of women said that their worries affected their mood, and 27% said that their daily functioning was affected. 41% of those with high suspicion findings compared to 28% of normals said they were at least somewhat worried about breast cancer. A decrease in concerns about breast cancer decreased chances of subsequent mammography adherence among all groups. Most women had subsequent mammograms on schedule.  Lidbrink E, Levi L, Pettersson I, Rosendahl I, Rutqvist LE, de la Torre B, et al. 1995 (12)  45 women who were recalled for 3-view mammographic exams and did not have breast cancer  NA  36 women were told of normal findings 1 hour after mammograms; the other nine were told one week later. The study, which took place in Sweden, includes not only psychological but also endocrine and immunological measures. SAQs. RR = 98% (volunteered), RR = 92%* (after women with breast cancer excluded)  2 different measurements; immediately after mammogram and three weeks after they were determined free of breast cancer. Long term (6 and 12 months) follow-up on 10 randomly chosen women  The mean mood score was lower at time 1 than time 2 (p<.05); no differences in endocrine or immunologic function were found. Emotion-focused copers had higher cortisol levels than problem-focused copers, suggesting greater stress. The authors speculated that the short waiting period may have attenuated the results.  Sutton S, Saidi G, Bickler G, Hunter J. 1995 (13)  Two overlapping samples. Sample A included 795 women who were due for screening at a mobile unit and returned questionnaires at 2 times. Sample B included 732 women who attended clinic during 3-month period and provided complete data. 306 attenders common to both samples and 100 non-attenders from Sample A were included. Only 24 FPs in all.  Mean = 58  This study had a prospective design with a retrospective analysis of anxiety and was conducted in the UK. SAQs. Sample A RR = 53%* (completed both questionnaires) RR = 27%* (included in analysis) Sample B RR = 84% (provided adequate data) RR = 35%* (included in analysis)  Questionnaires at three points: baseline, screening visit, and nine months later  Main analyses were on 306 attenders and 100 non-attenders. There was no significant difference in anxiety pre- and postscreening. Younger women were significantly more anxious (p<.01). On retrospective analysis, women with false positive results recalled feeling more anxiety at every stage as well as more pain and discomfort.  Swanson V, McIntosh IB, Power KG, Dobson H. 1996 (14)  1285 women  50-64  SAQs were used to assess anxiety, concern about breast problems and other effects on women invited to the UK National Health Service Breast Screening Program. RRs = 49% (women invited for screening), 68% (women attending for mammography)  Baseline and after screening  56% of the women who attended screening reported reduced anxiety as a result of screening, while 13% reported increased anxiety. Women with a family history of breast cancer or breast disease tended to be more worried. Mammography did not increase anxiety among those not previously worried. There was a significant increase in worry and physical, emotional and social dysfunction in the group of women who were recalled (p⩽.05) and assessed at the time of recall.  RR = response rate, * = response rate calculated by reviewers; SAQ = self-administered questionnaire; GHQ = general health questionnaire. View Large Table 2. Psychological aspects of the mammography experience Authors   Sample size   Age   Methods   Time of measurement   Results   Baines CJ, To T, Wall C. 1990 (17)  2299 women  40-59 at date of entry  SAQs used to assess attitudes after participation in the Canadian NBSS. After screening was completed, RR = 82%.  At completion of screening  After screening, only 5.4% said they were anxious; 15% said they were neither reassured nor anxious. Of women who reported anxiety, 60% said it was because of abnormal referral.  Fine MK, Rimer BK, Watts P. 1993 (18)  255 women  Mean = 52.8  Interviews with women in Philadelphia right after mammograms. An inception cohort was obtained through radiology centers. RR not available.  Immediately after mammogram  60% of the women said they felt anxious about their mammograms; one-third were quite a bit or extremely anxious. 71% of African-American women were anxious compared to 41% of white women (p<.0001). First time mammograms were more stressful than subsequent mammograms (p = .002). 83% of women with less than a high school education reported anxiety compared with 54% of women who had a high-school education or more (p = .001). 16% of all women were very worried about the result.  Valdimarsdottir HB, Bovbjerg DH, Kash KM, Holland JC, Osborne MP, Miller DG. 1995 (19)  58 women (none with abnormal reports were allowed)  Risk group Mean = 43.1 Compar. group Mean = 39.3  Women with a family history were recruited through a high risk clinic in New York, NY (n = 26). A comparison group was recruited from the community (n = 32). Measures were obtained at baseline and two time points after screening. SAQs. RR = 81%* (high-risk women), 84%* (comparison group, eligible and agreed to participate)  One month after screening  Acute distress was significantly higher prior to mammography as compared to 2 follow-ups (p = .005). The total mood disturbance decreased in the risk group but not in the comparison group (p<.006). Nonspecific psychological distress was higher in the risk group (p = .04). They also had higher levels of intrusive thoughts about breast cancer (p = .009) and avoidant thoughts (p = .006) even one month after normal result.  Walker LG, Cordiner CM, Gilbert FJ, Needham G, Deans HE, Affleck IR, et al. 1994 (20)  1635 women completed questionnaires at both baseline and screening  NA  Women eligible for the national screening program in Scotland completed SAQs before invitation and at screening six weeks later. RR = 89.5% (baseline questionnaires completed)  Prior to invitation and at screening  Anxiety and depression scales were significantly lower at screening than at baseline (p<.002, p<.0001). At screening, 19.9% obtained a clinically significant anxiety score while 5.7% obtained a clinically significant depression score. Some women reported stress-related behavior changes in the week before screening. Sleep, worry, and the ability to concentrate, relax, and feel happy were adversely affected and subjects reported more irritability. However, the proportion of women who reported these changes was modest (from 7% for ability to feel happy to 17.8% for sleeping). Adverse changes were correlated with anxiety and depression.  Authors   Sample size   Age   Methods   Time of measurement   Results   Baines CJ, To T, Wall C. 1990 (17)  2299 women  40-59 at date of entry  SAQs used to assess attitudes after participation in the Canadian NBSS. After screening was completed, RR = 82%.  At completion of screening  After screening, only 5.4% said they were anxious; 15% said they were neither reassured nor anxious. Of women who reported anxiety, 60% said it was because of abnormal referral.  Fine MK, Rimer BK, Watts P. 1993 (18)  255 women  Mean = 52.8  Interviews with women in Philadelphia right after mammograms. An inception cohort was obtained through radiology centers. RR not available.  Immediately after mammogram  60% of the women said they felt anxious about their mammograms; one-third were quite a bit or extremely anxious. 71% of African-American women were anxious compared to 41% of white women (p<.0001). First time mammograms were more stressful than subsequent mammograms (p = .002). 83% of women with less than a high school education reported anxiety compared with 54% of women who had a high-school education or more (p = .001). 16% of all women were very worried about the result.  Valdimarsdottir HB, Bovbjerg DH, Kash KM, Holland JC, Osborne MP, Miller DG. 1995 (19)  58 women (none with abnormal reports were allowed)  Risk group Mean = 43.1 Compar. group Mean = 39.3  Women with a family history were recruited through a high risk clinic in New York, NY (n = 26). A comparison group was recruited from the community (n = 32). Measures were obtained at baseline and two time points after screening. SAQs. RR = 81%* (high-risk women), 84%* (comparison group, eligible and agreed to participate)  One month after screening  Acute distress was significantly higher prior to mammography as compared to 2 follow-ups (p = .005). The total mood disturbance decreased in the risk group but not in the comparison group (p<.006). Nonspecific psychological distress was higher in the risk group (p = .04). They also had higher levels of intrusive thoughts about breast cancer (p = .009) and avoidant thoughts (p = .006) even one month after normal result.  Walker LG, Cordiner CM, Gilbert FJ, Needham G, Deans HE, Affleck IR, et al. 1994 (20)  1635 women completed questionnaires at both baseline and screening  NA  Women eligible for the national screening program in Scotland completed SAQs before invitation and at screening six weeks later. RR = 89.5% (baseline questionnaires completed)  Prior to invitation and at screening  Anxiety and depression scales were significantly lower at screening than at baseline (p<.002, p<.0001). At screening, 19.9% obtained a clinically significant anxiety score while 5.7% obtained a clinically significant depression score. Some women reported stress-related behavior changes in the week before screening. Sleep, worry, and the ability to concentrate, relax, and feel happy were adversely affected and subjects reported more irritability. However, the proportion of women who reported these changes was modest (from 7% for ability to feel happy to 17.8% for sleeping). Adverse changes were correlated with anxiety and depression.  RR = response rate; * = response rate calculated by reviewers; SAQ = self-administered questionnaire. View Large Support for preparation of this manuscript was provided by NCI funded grants 1R01CA63782 and 1PO1CA72099. 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JNCI MonographsOxford University Press

Published: Jan 1, 1997

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