Psychological distress and surveillance behaviors of women with a family history of breast cancer.

Women with a family history of breast cancer are at increased risk for developing the disease. This study investigated the beliefs of women at high risk for breast cancer (one or more first-degree relatives with breast cancer) about their breast cancer risk and the impact of this information on their surveillance behaviors and psychological distress. The Health Belief Model and the Fear Arousing Communications Theory were used in this study. Two hundred and seventeen women, enrolled in a breast protection program, completed a questionnaire regarding health beliefs and behaviors, social support, and psychological distress. While 94% came in for regularly scheduled mammograms, only 69% came in for regular clinical breast examinations. A discriminant function analysis revealed that increased cancer anxiety decreased regular clinical examinations (coefficient = -.65). Only 40% performed breast self-examination monthly, 10% never performed breast self-examination, and 50% did not perform breast self-examination regularly. High breast self-examination performance prior to coming to the program was the best predictor of current breast self-examination, and high anxiety predicted poor adherence to monthly breast self-examination (multiple R = .61). More than 27% of the women at high risk were defined as having a level of psychological distress consistent with the need for counseling. Women reporting more barriers to screening, fewer social supports, and low social desirability had more psychological distress (multiple R = .75). Higher anxiety was directly related to poor attendance at a clinical breast examination and poor adherence to monthly breast self-examination.(ABSTRACT TRUNCATED AT 250 WORDS)

Does genetic counseling have any impact on management of breast cancer risk?

Despite there being an increasing literature on the impact of cancer genetic counseling on risk perception and mental health, there is a lack of data describing impact on risk management. Genetic counseling and testing for cancer predisposition genes aims to improve the future health of those at high risk through appropriate surveillance and screening. However, management of breast cancer risk in women with a family history of this disease is an area of controversy. Counseling services may recommend specific risk management options to women, who then rely on their local screening service to make provision. This study investigated the impact of genetic counseling on management of breast cancer risk in women attending Cancer Family Clinics. A total of 293 women attending four genetic clinics were enrolled. Rates of breast self-examination, clinical breast examination, mammography, biopsy, detected cancers, and other screenings were documented. Participants' perceived benefits and barriers to mammography were assessed along with cancer worry. Results show that rates of mammography, clinical breast examination, and breast self-examination were increased following clinic attendance (p < 0.001). Women in the under 35 age-group had limited access to screening. Rates for biopsy and detected cancers were low. Women reported positive attitudes to mammography, with few reported barriers. Contrary to previous studies, there was no evidence that anxiety about breast cancer impedes uptake of health surveillance methods. Genetic counseling had a positive impact on management of breast cancer risk. Whether this translates into future health gains remains to be established.

Psychological counseling strategies for women at risk of breast cancer.

Women with family histories of breast cancer have a much higher risk of developing the disease than women in the general population. In the absence of primary prevention for breast cancer, secondary prevention in the form of early detection is our best bet against premature morbidity and mortality. This article describes the most salient psychological issues for high-risk women as well as ways for improving screening behaviors. Based on our work and other studies in the literature, we found that there were several key variables related to psychological distress and surveillance behaviors. Barriers to screening were a major reason why women did not engage in any breast cancer prevention behaviors. Cognitive deficits, in terms of lack of knowledge, and breast cancer misbeliefs contributed to poor adherence to screening. Most important, anxiety or emotional distress not only interfered with adherence to screening but also affected quality of life negatively in that many women needed psychological counseling. In developing psychological counseling strategies for high-risk women, we focused on the treatment outcomes of reducing emotional distress, decreasing perceived vulnerability, and improving adherence to screening behaviors. We conducted a preliminary study by piloting a group psychoeducational intervention for 6 consecutive weeks. This intervention was found to significantly reduce perception of risk (P < .02) and to increase adherence to screening behaviors (P < .01). If proven effective in a randomized controlled trial, this intervention can be proposed to other cancer centers and prevention programs for implementation and enhancement of the behaviors among high-risk women that will assure early detection and decrease breast cancer mortality.

Psychosocial and ethical implications of defining genetic risk for cancers.

In summary, we need to provide fully informed consent regarding the hazards and the benefits of genetic testing and defining risk. This reflects the first ethical principle of autonomy. It is the responsibility of the counseling team to make sure that the individual is psychologically equipped to deal with the emotional distress that may result from testing. An undue burden must not be placed on someone and harm must not be inflicted. This is the second ethical principle of beneficence. Third, awareness of the potential problems of testing is extremely important. These issues are those of disclosure, insurance problems, and employment problems--the third ethical principle of confidentiality. Recommendations for screening guidelines, regardless of testing results, should be provided. It is important for women who are not gene carriers to know that they still need to go for screening. Lastly, we need to find ways to help individuals cope with their risk status, whether it is actual high risk or perceived high risk. Helping women to develop positive coping strategies and to adhere to screening is extremely important. As the Huntington's data indicated, over time, regardless of their risk levels, individuals do learn how to cope and adapt with the outcome of testing. Women and men need to learn how to live with their risk status so that the negative psychological sequelae will be minimized.

Stress and burnout in oncology.

This article identifies the professional stressors experienced by nurses, house staff, and medical oncologists and examines the effect of stress and personality attributes on burnout scores. A survey was conducted of 261 house staff, nurses, and medical oncologists in a cancer research hospital, and oncologists in outside clinical practices. It measured burnout, psychological distress, and physical symptoms. Each participant completed a questionnaire that quantified life stressors, personality attributes, burnout, psychological distress, physical symptoms, coping strategies, and social support. The results showed that house staff experienced the greatest burnout. They also reported greater emotional exhaustion, a feeling of emotional distance from patients, and a poorer sense of personal accomplishment. Negative work events contributed significantly to level of burnout; however, having a "hardy" personality helped to alleviate burnout. Nurses reported more physical symptoms than house staff and oncologists. However, they were less emotionally distant from patients. Women reported a lower sense of accomplishment and greater distress. The four most frequent methods of relaxing were talking to friends, using humor, drinking coffee or eating, and watching television. One unexpected finding was that the greater the perception of oneself as religious, the lower the level of burnout. Thus, while the rewards of working in oncology are usually sufficient to keep nurses and doctors in the field, they also experience burnout symptoms that vary by gender and personal attributes. House staff are most stressed and report the greatest and most severe symptoms of stress. Interventions are needed that address the specific problems of each group.

ACGME competencies in neurology: web-based objective simulated computerized clinical encounters.

OBJECTIVE: The American Headache Society developed an innovative Web-based neurology resident educational program to 1) meet the objectives of the Accreditation Council for Graduate Medical Education Outcomes Project; 2) provide measurable improvement of a neurology resident's understanding of headache and the performance within each core competency; 3) assist residents and program directors in identifying knowledge gaps; and, ultimately, 4) improve the quality of patient care through enhanced educational initiatives. METHODS: Quantitative analysis focused on pretest and post-test results, level attainment on case-based simulations, competency achievement, and interactions between cases. One of four validated global scores was related to each resident response on all competency learning opportunities and was measured, from one case to another, to determine improvement and understanding. The pretest and post-test each consisted of 50 randomized questions that tested baseline and improvement on specific core competencies and understanding of headache. RESULTS: The pretest mean score was 30.08, and the post-test mean score was 34.79. A paired sample t test analysis showed a significant difference from pretest to post-test scores (M = -4.72, SD = 4.88, t[91] = -9.269, p < 0.001). There was significant improvement in the competencies as the residents moved through the cases as well as in each of the competencies from the pretest to the post-test. Results showed that residents increased their knowledge and performance by synthesizing the content. CONCLUSIONS: This outcomes analysis demonstrates the effectiveness of the American Headache Society Neurology Resident's Program in improving the resident's knowledge of headache medicine and Accreditation Council for Graduate Medical Education core competencies.

Psychological aspects of cancer screening in high-risk populations.

BACKGROUND: The focus of this paper is to define who is at high risk for breast cancer and the psychological issues in breast cancer screening. Within this context, the emphasis is on secondary malignancies after treatment for childhood cancers, including age appropriate guidelines for cancer screening. While there have been no studies of distress in women at high risk for breast cancer related to childhood cancer treatments, we can extrapolate from this study of women at high risk for breast cancer because of genetic susceptibility. PROCEDURE: Three hundred and ninety one women at increased risk for developing breast cancer from rural and urban areas of the United States completed a questionnaire regarding genetic testing, psychological distress, and health beliefs. They were compared with 382 age-matched controls, from the same geographical areas, with no family history of breast cancer in a first degree relative. RESULTS: A multiple regression analysis revealed that the best predictors of willingness to undergo genetic testing were: greater perception of being a gene mutation carrier, fewer negative and more positive aspects to testing, being at higher risk for breast cancer, and greater breast cancer anxiety (30% of variance). CONCLUSIONS: Greater anxiety increased interest in testing but decreased adherence to screening behaviors. Women who have had childhood cancers with chest radiation treatment are at higher risk for breast cancer. The information gleaned from this study can be adapted to help them learn their real risk for developing breast cancer and to understand the importance of screening in the early detection of breast cancer.

Reporting bilaterality status in first-degree relatives with breast cancer: a validity study.

The objective of this study was to validate reports on the bilaterality status of breast cancer in first-degree relatives of women with a strong family history of the disease; i.e., women with 1) two first-degree relatives who have, or have had, breast cancer; 2) one first- and one second-degree affected relative; or 3) one first-degree relative with diagnosis of breast cancer before the age of 50 years and/or bilateral breast cancer. We were able to obtain hospital records for 94 affected relatives of 83 patients who agreed to participate in the study. The accounts of these women were compared to the bilaterality status indicated in the hospital records of the affected relatives. Inconsistencies that might have been attributed to incomplete medical records were resolved through personal interviews with the participants, and when indicated, with other family members or the physician of the affected relative. Overall, 89.4% (84/94) of the reports validated in this manner were correct. Participants who reported unilateral breast cancer in a first-degree relative were correct 94.4% (68/72) of the time. Similarly, 94.0% (47/50) of the accounts concerning affected living relatives were accurate, regardless of whether the participant had indicated unilateral or bilateral disease. However, participants who reported bilateral breast cancer in a deceased relative were accurate only 61.5% (8/13) of the time. Incorrect reports were associated with misunderstanding of medical terminology, especially if the participant was young at the time of the diagnosis of her relative.

Psychosocial aspects of cancer genetics: women at high risk for breast and ovarian cancer.

In the past five years the advent of cancer genetic testing has created concern about the negative psychosocial sequelae of genetic counseling and testing. Research indicates that the women most likely to seek genetic testing are anxious about carrying a gene mutation and developing breast cancer. Women who are at high risk have poor knowledge and the expectation of being a gene-mutation carrier. High levels of distress have been shown to interfere with decision-making about genetic testing. Further, individuals who decline genetic testing may be at increased risk for depressive symptoms even more than those who are found to be gene-mutation carriers. There is great concern that inappropriate candidates will seek genetic testing. Improved education and access to genetic counseling are essential to help women make appropriate decisions about genetic testing. Strategies for the prevention of breast and ovarian cancer are explored, and methods to reduce the adverse psychosocial effects of decision-making about genetic testing and preventive treatment strategies are suggested.

The role of religious and spiritual beliefs in coping with malignant melanoma.

This study investigated the role of spiritual and religious beliefs in ambulatory patients coping with malignant melanoma. One-hundred and seventeen patients with melanoma being seen in an outpatient clinic completed a battery of measurements including the newly validated Systems of Belief Inventory (SBI-54). No correlation was found between SBI-54 scores and levels of distress. However, there was a correlation between greater reliance on spiritual and religious beliefs and use of an active-cognitive coping style (r = 0.46, p < 0.0001). Data suggest that use of religious and spiritual beliefs is associated with an active rather than passive form of coping. We suggest that such beliefs provide a helpful active-cognitive framework for many individuals from which to face the existential crises of life-threatening illness.

Determinants of the willingness to endorse assisted suicide. A survey of physicians, nurses, and social workers.

The authors surveyed 1,137 physicians, nurses, and social workers (overall response = 48%) to characterize the willingness to endorse assisted suicide. Willingness to endorse varied among disciplines and was negatively correlated with level of religious belief (r = -0.35, P < 0.0001), knowledge of symptom management (r = -0.21, P < 0.0001), and time managing symptoms (r = -0.21, P < 0.0001). On multivariate analysis, the significant predictors were lesser religious belief (P < 0.0001), greater concern about analgesic toxicity (P = 0.001), diminished empathy (P = 0.03), lesser knowledge of symptom management (P < 0.04), and the interaction between religious belief and knowledge of symptom management (P = 0.04). Professionals' attitudes toward assisted suicide are influenced by diverse personal attributes, among which may be competence in symptom management and burnout.

A brief spiritual beliefs inventory for use in quality of life research in life-threatening illness.

This paper reports on the initial efforts to validate a brief self-report inventory, the Systems of Belief Inventory(SBI-15R), for use in quality of life (QOL) and psychosocial research studying adjustment to illness. The SBI-15R was designed to measure religious and spiritual beliefs and practices, and the social support derived from a community sharing those beliefs. The authors proposed this scale to address the need for greater exploration of spiritual and religious beliefs in QOL, stress and coping research. Phase I: Item generation. The research team identified four domains comprised of 35 items that make up spiritual and religious beliefs and practices. The instrument was piloted in a structured interview format on 12 hospitalized patients with varying sites of cancer. Phase II: Formation of SBI-54. After these initial efforts, the research team increased the number of items to 54 and adopted a self-report format. To assess patients reactions to the questionnaire, the new version was piloted on 50 outpatients with malignant melanoma. Phase III: Initial validation. To begin establishing validation, 301 healthy individuals with no history of cancer or serious illness in the prior year were asked to complete the SBI-54 and several other instruments. A principal components analysis with varimax rotation of the SBI-54 identified two factors, in contrast to the four which were hypothesized, one measuring spiritual beliefs and practices, the other measuring social support related to the respondent's religious community. Phase IV: Item reduction of the SBI-54. A shortened version of the SBI-54 with 15 items, five from the items identifying factor I and ten from those identifying factor II, was developed to lessen patient burden. The new SBI-15 correlated highly with the SBI-54, and demonstrated convergent, divergent, and discriminant validity. Revision of SBI-15. The investigators rephrased one statement in order to broaden the applicability of the SBI-15 to patients other than those with a diagnosis of cancer, and to healthy individuals. DISCUSSION. The SBI-15R met tests of internal consistency, test-retest reliability, and convergent, divergent, and discriminant validity in both physically healthy and physically ill individuals. The SBI-15R may have value in measuring religious and spiritual beliefs as a potentially mediating variable in coping with life-threatening illness, and in the measurement of QOL.