Cancer-related Worry Research Articles

Putting it all behind: long-term psychological impact of an inconclusive DNA test result for breast cancer

PurposeAn inconclusive DNA-result for breast cancer may leave women with uncertainty that cannot be relieved. We assessed the influence of beliefs women held about their inconclusive DNA-result on psychological well-being and whether women had been able to put the period of DNA testing behind them. MethodsIn total, 215 women completed a baseline and a follow-up questionnaire 2.5 till 7 years after DNA test disclosure. Within the group of 147 women who received an inconclusive result (either a personal result or the result of an affected family member) multiple regression analyses were applied to investigate the relevance of women's personal beliefs. ResultsPersonal beliefs and ambivalence about an inconclusive DNA-result were associated with cancer-related worry and distress (P < 0.05). Moreover, these beliefs seemed to be an especially strong predictor of whether women had been able to leave the period of DNA testing behind them, even after controlling for all measures of psychological distress (P < 0.001). DiscussionPsychological distress measures may provide an important but incomplete picture of how women make sense of an inconclusive DNA-result. These findings underscore the importance of discussing counselees' beliefs and expectations openly to enhance well-being and adaptation on the long term.

Psychological and Clinical Factors Implicated in Decision Making About a Trial of Low-Dose Tamoxifen in Hormone Replacement Therapy Users

To assess the sociodemographic, health-related, and psychological factors that influence the decision of women on hormone replacement therapy (HRT) to participate in a phase III trial of low-dose tamoxifen. Clinical and psychological factors were assessed in 265 women who accepted and 192 women who refused to participate in a proposed trial. Health-related and sociodemographic factors included age, Gail risk, body mass index, education, current HRT use, regular mammographic screening, smoking habit, physical activity, alcohol use, concern about adverse effects, and physician recommendation. Psychological factors included breast cancer-related worry, absolute and comparative cancer risk perception, anxiety, and depression. The most frequent reasons for entry were willingness to participate in a research program (60%), the need/desire to receive frequent medical care (58%), and the desire to contribute to medical knowledge (44%); whereas reasons for refusal included fear of medication abuse (33%), concern about adverse effects (31%), and physician advice against enrollment (24%). In a logistic model, after adjusting for current HRT use, the trial participation was directly associated with satisfaction with clearly explained study objectives (odds ratio [OR] = 9.33; 95% CI, 4.04 to 21.55) and inversely associated with high breast cancer worry (OR = 0.15; 95% CI, 0.03 to 0.77) and age > or = 60 years (OR = 0.40; 95% CI, 0.22 to 0.73). Participation in a chemoprevention trial among HRT users is associated with a younger age, no breast cancer worry, and satisfaction with health care providers, suggesting a condition of psychological well-being as a promoting factor and emphasizing the importance of thorough counseling at study presentation.

Interventions to improve risk communication in clinical genetics: Systematic review

Objective Effective risk communication may enable clients to participate effectively in decision-making about their health and health care. A systematic review of existing literature on risk communication in genetics, and its effects on key outcomes for clients, was undertaken. Method Systematic searching of six electronic databases and data extraction from included studies; narrative synthesis of results. Results Twenty-eight studies were included, principally from cancer genetics. Sixteen communication interventions have been evaluated, generally showing improvements in cognitive outcomes for users, such as knowledge, understanding and risk perception, and without adverse effects on anxiety, cancer-related worry and depression. However, often it was the supportive or emotional elements of counselling that provided benefits to users, rather than the informational or educational elements. Similar results were found in 12 further studies of decision aids which also appear to achieve shorter consultations that can focus more on the supportive elements of counselling. Conclusion For both communication models and decision aids, the supportive or emotional elements of counselling provided more benefits to users than the informational or educational elements. Practice implications Debate is required on how to strike a balance between the medical model, its agenda and perceived requirements to disclose or discuss a range of issues and the sometimes competing goals of addressing users’ concerns, needs for support, issues of loss and relationship problems.

Perceived ambiguity about cancer prevention recommendations: associations with cancer‐related perceptions and behaviours in a US population survey

Health information reaching the public today is often characterized by what decision theorists have termed 'ambiguity'- i.e. uncertainty regarding the information's reliability, credibility or adequacy. This is a critical problem, as growing research suggests that ambiguity has important effects-promoting pessimistic judgments about risks and potential outcomes of risk-reducing behaviours, and lowering adoption of these behaviours. However, little is known about the public's perceptions of ambiguity in the health information domain, the effects of these perceptions, and the factors that influence these effects. To examine associations between perceived ambiguity regarding cancer prevention recommendations and prevention-related perceptions and behaviours, and to explore how these associations differ by cancer type. Cross-sectional analysis of data on 4,070 adults participating in the 2005 US Health Information National Trends Survey. MAIN VARIABLES AND OUTCOME MEASURES: We examined associations between perceived ambiguity about colon, skin and lung cancer prevention recommendations and two main outcome variables: (i) risk-related cognitions (perceived cancer risk and preventability, cancer-related worry) and (ii) risk-modifying behaviours (colon cancer screening, sunscreen use and smoking abstinence). Perceived ambiguity was inversely associated with perceptions of the preventability of all three cancers, and with cancer-specific risk-modifying behaviours including sigmoidoscopy-colonoscopy testing, sunscreen use and smoking abstinence. Relationships with cancer risk perceptions and worry varied across different cancer types. Perceived ambiguity about cancer prevention recommendations has significant and predictable associations with cancer prevention-related cognitions and behaviours, and some associations differ by cancer type. These findings have implications for future research and communication efforts.

Health Perceptions in Patients Who Undergo Screening and Workup for Prostate Cancer

False-positive screening tests may induce persistent psychological distress. This study was designed to determine whether a positive screening test with negative biopsy findings for prostate cancer is associated with worsened mental health during short-term follow-up. We conducted a cross-sectional telephone survey of two groups of men approximately 2 months after testing: group 1, 109 men with an abnormal prostate-specific antigen level or digital rectal examination findings but with negative biopsy findings for prostate cancer; and group 2, 101 age-matched primary care patients with PSA screening levels in the reference range (less than 4 ng/mL). Primary outcomes included state anxiety and prostate cancer-related worry. Secondary outcomes included Medical Outcomes Study Short Form 36-item Health Survey subscales and sexual function items. Multivariate regression techniques were used to adjust for differences in baseline covariates. Group 1 patients were more worried than group 2 patients about getting prostate cancer (mean worry 3.9 versus 4.5, P = 0.0001, using a 5-point scale, with 1 indicating extreme worry and 5 no worry). Group 1 patients also perceived their risk of prostate cancer to be significantly greater than that of controls (P = 0.001). No significant differences were found across state anxiety or Medical Outcomes Study Short Form 36-item Health Survey subscales. Sexual bother was greater for group 1 patients, with 19% reporting that sexual function was a moderate to big problem compared with 10% of group 2 patients (P = 0.0001). Men with abnormal prostate cancer screening tests report increased cancer-related worry and more problems with sexual function, despite having a negative biopsy result. Effective counseling interventions are needed before prostate cancer screening and during follow-up.

Perceived Ambiguity About Cancer Prevention Recommendations: Relationship to Perceptions of Cancer Preventability, Risk, and Worry

In this study, we apply the concept of “ambiguity,” as developed in the decision theory literature, to an analysis of potential psychological consequences of uncertainty about cancer prevention recommendations. We used Health Information National Trends Survey (HINTS) 2003 data to examine how perceived ambiguity about cancer prevention recommendations relates to three other cognitive variables known to influence cancer-protective behavior: perceived cancer preventability, perceived cancer risk, and cancer-related worry. Using logistic regression analyses, we tested several predictions derived from a review of literature on the effects of ambiguity perceptions on decision making, cognitions, and emotions. We found perceived ambiguity to have a strong negative relationship with perceived cancer preventability, consistent with “ambiguity aversion”—a pessimistic bias in the interpretation of ambiguity. Cancer worry moderated this relationship; ambiguity aversion increased with higher levels of worry. At the same time, perceived ambiguity was positively related to both perceived cancer risk and cancer worry. Furthermore, perceived risk partially mediated the relationship between perceived ambiguity and worry. These findings suggest that perceived ambiguity about cancer prevention recommendations may have broad and important effects on other health cognitions. We discuss ethical implications of these findings for health communication efforts, and propose a tentative causal model to guide future research.

The impact of receiving genetic test results on general and cancer‐specific psychologic distress among members of an African‐American kindred with a BRCA1 mutation

Numerous studies have examined short-term and long-term psychologic responses to genetic testing for breast/ovarian carcinoma susceptibility in clinic samples and among families who participated in genetic linkage studies. However, to the authors' knowledge, the vast majority of studies focused on non-Latino whites and women. In this prospective study, the authors investigated the psychologic impact of receiving carrier-specific BRCA1 test results as part of a genetic education/counseling intervention in female and male members of an African-American kindred with a BRCA1 mutation. Eighty-five of 101 participating kindred members (84%) underwent genetic counseling/education and testing according to an established protocol. Participants completed in-person or telephone-administered, computer-assisted interviews. At baseline and after the receipt of test results (1 mo, 4 mos, and 12 mos), general psychologic distress (i.e., anxiety and depression) and cancer-specific distress were measured. Statistical analyses were performed using linear mixed-model approaches for longitudinal data. The hypothesis that mutation carriers, particularly women who had no personal history of breast carcinoma, were expected to report greater distress than noncarriers was not supported. After controlling for socioeconomic status and personal history of breast/ovarian carcinoma, noncarriers reported significant declines in the distress measures (depressive symptoms, anxiety and cancer-related worries), whereas distress was not altered markedly in carriers after genetic risk notification. The current findings suggested that individuals receiving BRCA1 test results who learn that they are not carriers of a deleterious mutation may experience psychologic benefits. Furthermore, those who learned that they were mutation carriers did not appear to have adverse, clinically meaningful psychologic outcomes.

The enhancing connections program: pilot study of a cognitive‐behavioral intervention for mothers and children affected by breast cancer

In 2005, approximately 211,240 women in the US will be diagnosed with early stage breast cancer and an estimated 22% will be child rearing. Research reveals that both mothers and children have elevated distress attributed to the cancer; struggle with how to talk about and deal with the impact of the cancer; and both fear the mother will die. The Enhancing Connections Program (EC) was developed to reduce this cancer-related distress and morbidity. The program involves five, 1-hour educational counseling sessions delivered at 2-week intervals by specially trained clinicians. This study reports on the program's short-term impact on mothers' and children's adjustment. Thirteen households were recruited within 7.5 months of the mother's diagnosis with early stage breast cancer. Impact was evaluated within a single group design using data obtained from standardized questionnaires with established reliability and validity. Results revealed significant improvements in the mother's depressed mood, anxiety, and self-confidence to assist her child (mother report). There were also significant decreases in the child's behavioral problems (mother and father report); the child's cancer-related worries (child report); and the child's anxiety/depressed mood (mother and father report). Further evaluation is warranted within a clinical trial.

Coping among older‐adult, long‐term cancer survivors

This research focuses on the coping behavior of older adult, long-term cancer survivors. Specifically, it identifies the personal (including race and gender) and illness/treatment characteristics of survivors that are significantly associated with the use of specific coping styles: planning, acceptance, venting, denial and seeking social support. It also examines the mediating role that these forms of coping play in terms of psychological distress: anxiety, depression and cancer-related worries. Multivariate analysis of data from a random sample of 321 long-term survivors in a major cancer center tumor registry is used to address the above issues. The most prominent forms of coping used by long-term survivors were planning and acceptance; least used were venting and denial. Increased age was associated with lower use of all forms of coping, but cancer type was not. Denial as a form of coping was associated with higher anxiety, depression and cancer-related worries. While race was not found to be a significant predictor of coping style, it was a significant predictor of three dimensions of psychological distress, anxiety, depression and cancer-related worries, with African Americans exhibiting lower levels of distress than Whites. The relevance of these findings for health and social service practitioners is discussed.

Reduced rates of cancer-related worries and mortality associated with guideline surveillance after breast cancer therapy

Guidelines have been developed for appropriate post-therapy surveillance for breast cancer recurrence. Two objectives of post-therapy surveillance are to support and counsel patients and to detect potentially curable local recurrences and new cancers in the opposite breast. The objective of this investigation was to assess the impact of guideline surveillance (history, physical examination, and annual mammography) on cancer-related worries and all-cause mortality. We collected data on a cohort of 303 Massachusetts women with stages I or II breast cancer diagnosed between 1992 and 1994. Cases were women with increasing cancer-related worries or decedents. We used risk-set sampling to match five controls to each case on follow-up time. Cases and members of their matched risk set were characterized with respect to receipt of guideline surveillance and covariates preceding the date of their outcomes. The adjusted odds ratio associating guideline surveillance in the preceding year with an increase in cancer-related worries equaled 0.37 (95% CI = 0.14-0.99). The adjusted odds ratio associating continuous guideline surveillance with all-cause mortality equaled 0.66 (95% CI = 0.51-0.86). The results are consistent with the stated objectives of surveillance follow-up of breast cancer patients after the completion of their primary therapy.

Development of a risk assessment tool for women with a family history of breast cancer

Background: Innovative technologies that enable the collection of family history information and the assessment of breast cancer risk have a potential to enhance the quality of preventive care. We developed a computerized tool that supports stratification of breast cancer risk, genetic risk assessment in the clinical environment (GRACE). Methods: In a preliminary evaluation of the tool's impact, we randomized women with a family history of breast cancer ( n = 72) to either use the GRACE tool or undergo risk counseling by a nurse specialist. Results: There was no statistically significant differences between the GRACE and nurse counselling groups in risk perceptions ( F = .03, P > .05) and cancer-related worries ( F = .80, P > .05). However, patients reported more positive attitudes toward working with the nurse. Conclusion: It was feasible to use GRACE in a Clinic. Additional research is required to identify solutions for providing emotional support in conjunction with the tool.

Diagnostic Criteria for Psychosomatic Research and Psychosocial Variables in Breast Cancer Patients

The aim of the study was to examine the relationship of the Diagnostic Criteria for Psychosomatic Research (DCPR) with psychosocial variables and quality of life among cancer patients. Of 105 women with breast cancer who participated in the study, 40 (38.1%) had symptoms meeting the criteria for at least one DCPR syndrome, and 30 (28.6%) had more than one DCPR syndrome. Health anxiety, demoralization, and alexithymia were the most frequent DCPR syndromes. Patients who were diagnosed with DCPR syndromes reported higher levels of cancer-related worries and poorer quality of life than those without a DCPR diagnosis. Analysis of the single DCPR clusters and coping with cancer indicated that health anxiety was related to higher scores on the Mini-Mental Adjustment to Cancer (Mini-MAC) anxious preoccupation subscale, DCPR demoralization was related to higher scores on the Mini-MAC hopelessness subscale, and DCPR alexithymia was related to higher scores on the Mini-MAC avoidance subscale. The study indicates the usefulness of the application of the DCPR in breast cancer, although further research is needed to improve the feasibility and internal validity of DCPR constructs.

Psychosocial impact of breast/ovarian (BRCA 1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort

This multi-centre UK study assesses the impact of predictive testing for breast and ovarian cancer predisposition genes (BRCA1/2) in the clinical context. In the year following predictive testing, 261 adults (59 male) from nine UK genetics centres participated; 91 gene mutation carriers and 170 noncarriers. Self-report questionnaires were completed at baseline (pre-genetic testing) and 1, 4 and 12 months following the genetic test result. Men were assessed for general mental health (by general health questionnaire (GHQ)) and women for general mental health, cancer-related worry, intrusive and avoidant thoughts, perception of risk and risk management behaviour. Main comparisons were between female carriers and noncarriers on all measures and men and women for general mental health. Female noncarriers benefited psychologically, with significant reductions in cancer-related worry following testing (P<0.001). However, younger female carriers (<50 years) showed a rise in cancer-related worry 1 month post-testing (P<0.05). This returned to pre-testing baseline levels 12 months later, but worry remained significantly higher than noncarriers throughout (P<0.01). There were no significant differences in GHQ scores between males and females (both carriers and noncarriers) at any time point. Female carriers engaged in significantly more risk management strategies than noncarriers in the year following testing (e.g. mammograms; 92% carriers vs 30% noncarriers). In the 12 months post-testing, 28% carriers had bilateral risk-reducing mastectomy and 31% oophorectomy. Oophorectomy was confined to older (mean 41 yrs) women who already had children. However, worry about cancer was not assuaged by surgery following genetic testing, and this requires further investigation. In all, 20% of female carriers reported insurance problems. The data show persistent worry in younger female gene carriers and confirm changes in risk management consistent with carrier status. Men were not adversely affected by genetic testing in terms of their general mental health.

Predictive testing for BRCA1/2: attributes, risk perception and management in a multi-centre clinical cohort.

The aim of this multi-centre UK study is to examine the attributes of a cohort offered predictive genetic testing for breast/ovarian cancer predisposition. Participants are adults unaffected with cancer from families with a known BRCA1/2 mutation. This is the first large multi-centre study of this population in the UK. The study evaluates mental health, perceived risk of developing cancer, preferred risk management options, and motivation for genetic testing. Participants were assessed when coming forward for genetic counselling prior to proceeding to genetic testing. Three hundred and twelve individuals, 76% of whom are female, from nine UK centres participated in the study. There are no gender differences in rates of psychiatric morbidity. Younger women (<50 years) are more worried about developing cancer than older women. Few women provide accurate figures for the population risk of breast (37%) or ovarian (6%) cancer but most think that they are at higher risk of developing breast (88%) and ovarian (69%) cancer than the average woman. Cancer related worry is not associated with perceived risk or uptake of risk management options except breast self-examination. The findings indicate that younger women may be particularly vulnerable at the time of the offer of a predictive genetic test.British Journal of Cancer (2002) 86, 1209–1216. DOI: 10.1038/sj/bjc/6600253 www.bjcancer.com© 2002 Cancer Research UK

Cancer worries, risk perceptions and associations with interest in DNA testing and clinic satisfaction in a familial colorectal cancer clinic.

Multi-disciplinary familial cancer clinics are becoming an integral part of cancer services. It is, therefore, important to assess how attendance at these clinics impacts on cancer-related concerns, risk perceptions and behavioural intentions, and how the clinic services are being received by those using them. This study has assessed a familial colorectal cancer clinic with respect to cancer-related worries and risk perceptions and their impact on interest in DNA testing and overall satisfaction with the clinic. Pre- and post-clinic questionnaires were completed by 127 patients and relatives attending the clinic. After attending the clinic, the proportion of people 'very' or 'extremely' worried about developing bowel cancer reduced from 49 (pre-clinic) to 34% (p = 0.002). Worry about bowel cancer was positively associated with younger age, higher education level and higher perceived risk of developing cancer. A reduction in level of risk perception correlated with a lower likelihood of feeling 'very worried' about developing bowel cancer. Of those intending to go ahead with DNA testing, 58% were 'very worried' about bowel cancer compared with 15% of those not intending to proceed with testing, suggesting that worry was a motivation for interest in DNA testing. One-third of participants indicated another session of genetic counselling would be helpful. Within this group, a higher proportion was very worried about bowel cancer (43%) than for those who did not want another session (17%). Attendance at this familial colorectal cancer clinic alleviated worry for many individuals, partly due to improved information about risk of colorectal cancer.

The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer

The present study investigated: (1) perception of genetic risk and, (2) the psychological effects of genetic counselling in women with a family history of breast cancer. Using a prospective design, with assessment pre- and post-genetic counselling at clinics and by postal follow-up at 1, 6 and 12 months, attenders at four South London genetic clinics were assessed. Participants included 282 women with a family history of breast cancer. Outcome was measured in terms of mental health, cancer-specific distress and risk perception. High levels of cancer-specific distress were found pre-genetic counselling, with 28% of participants reporting that they worried about breast cancer ‘frequently or constantly’ and 18% that worry about breast cancer was ‘a severe or definite problem’. Following genetic counselling, levels of cancer-specific distress were unchanged. General mental health remained unchanged over time (33% psychiatric cases detected pre-genetic counselling, 27% at 12 months after genetic counselling). Prior to their genetics consultation, participants showed poor knowledge of their lifetime risk of breast cancer since there was no association between their perceived lifetime risk (when they were asked to express this as a 1 in x odds ratio) and their actual risk, when the latter was calculated by the geneticist at the clinic using the CASH model. In contrast, women were more accurate about their risk of breast cancer pre-genetic counselling when this was assessed in broad categorical terms (i.e. very much lower/very much higher than the average woman) with a significant association between this rating and the subsequently calculated CASH risk figure (P= 0.001). Genetic counselling produced a modest shift in the accuracy of perceived lifetime risk, expressed as an odds ratio, which was maintained at 12 months' follow-up. A significant minority failed to benefit from genetic counselling; 77 women continued to over-estimate their risk and maintain high levels of cancer-related worry. Most clinic attenders were inaccurate in their estimates of the population risk of breast cancer with only 24% able to give the correct figure prior to genetic counselling and 36% over-estimating this risk. There was some improvement following genetic counselling with 62% able to give the correct figure, but this information was poorly retained and this figure had dropped to 34% by the 1-year follow-up. The study showed that women attending for genetic counselling are worried about breast cancer, with 34% indicating that they had initiated the referral to the genetic clinic themselves. This anxiety is not alleviated by genetic counselling, although women reported that it was less of a problem at follow-up. Women who continue to over-estimate their risk and worry about breast cancer are likely to go on seeking unnecessary screening if they are not reassured. © 1999 Cancer Research Campaign

Family history of breast cancer: what do women understand and recall about their genetic risk?

The current study has two aims: (1) to look at people's recall of risk information after genetic counselling and (2) to determine the impact of receiving an audiotape of the...

Predictors of and Satisfaction with Bilateral Prophylactic Mastectomy

Background. Women with a first-degree relative with breast cancer are at increased risk of developing this disease. The optimal medical management of these women is unclear, with options including close breast cancer screening, bilateral prophylactic mastectomy, or participation in chemoprevention trials. Among women who undergo prophylactic bilateral mastectomy, very little is known about satisfaction with this surgery. Also, we know very little about variables related to prophylactic mastectomy decision making. Methods. Participants were women at increased risk of breast cancer due to family history. These women were categorized by self-report as not interested in prophylactic mastectomy (n = 58), interested but deciding against surgery (n = 92), or subsequently having a bilateral prophylactic mastectomy (n = 14). Information on screening practices, risk. perception, level of depression, and cancer-related worry was collected. Women completing prophylactic mastectomy reported on their satisfaction with the surgery and breast reconstruction. Results. Women selecting surgery reported more breast cancer worry. The group expressing no interest in surgery reported fewer biopsies and lower risk estimates. Women completing surgery were satisfied with their decision, although satisfaction with reconstruction was mixed. Conclusion. Factors influencing surgical decision making may include breast-cancer-related worry, biopsy history, and subjective breast cancer risk.

Coping, psychosocial well-being and anxiety in cancer patients at follow-up visits.

Coping, psychosocial well-being, situation-specific anxiety and cancer-related worry were assessed in 197 consecutive cancer patients attending follow-up visits. Participants completed questionnaire on three occasions: at the follow-up visit, some days later (n = 175) and three weeks later (n = 125). High levels of coping styles 'Anxious Preoccupation' and 'Helplessness/Hopelessness' were associated with low levels of psychosocial well-being, more situation-specific anxiety and more cancer-related worry. High levels of 'Fighting Spirit' and 'Fatalistic' were found to be associated with high psychosocial well-being and, for 'Fighting Spirit', also with less cancer-related worry. Patients with a 'dismal' prognosis were found to have higher levels of 'Helplessness/Hopelessness' than patients with a more 'favorable' prognosis. Clinical implications of these findings are discussed.

Anxiety and Cancer-Related Worry of Cancer Patients at Routine Follow-up Visits

Anxiety and cancer-related worry were assessed in 197 consecutive cancer patients attending follow-up visits. Participants completed questionnaires on three occasions: at the visit, some days later, and three weeks later. Results show that while a majority of patients feel no or only mild anxiety in conjunction to the follow-up visit, about one-fifth report moderate or strong anxiety. Many patients (46%) worry about suffering a recurrence and about overlooking symptoms of new cancer (33%). Patients who were not in complete remission reported higher levels of cancer-related worry concerning the follow-up visit than did patients in remission. Among patients in remission, those who recently terminated treatment reported more overall distress than patients two or more years since treatment termination.