Experiences Of Breast Cancer Patients Research Articles

Life-lines of relapsed breast cancer patients : A study of post-recurrence distress and coping strategies

This study investigated latent distress and coping mechanisms existing in the experiences of relapsed breast cancer patients in order to identify strategies for improving support structures for this population. Semi-structured interviews were performed with 26 subjects receiving care from two medical facilities in the Tokyo Metropolitan area. In this study, the life-line methodology was selected as a tool to express the subjective QOL of subjects. Specifically, we used life-lines to examine the changing processes of the subjective QOL and to explore latent distress and coping mechanisms.We found that 1) the life-lines of approximately half of the subjects regained a pre-initial diagnosis level of psychosocial equanimity after both the initial diagnosis of cancer and the first episode of recurrence ; however, the life-lines of some subjects remained depressed as they suffered multiple recurrences and a concomitant loss of hope, 2) relapsed patients faced an awareness of death and a sense of uncertainty, a decline in pleasures, and a declining ability to find meaning in life, 3) the recovery of the level of the life-line accompanied changes corresponding to a scale recalibration, a change in values, and a reconceptualization as described in response shift theory. These changes were confirmed in two areas : those related to sickness, treatment and survival, and those related to finding a significance in life itself and asserting one's reasons for living. Furthermore, as a result of cognitive coping strategies, the maintenance of life-line levels after recovery were attained in the same two areas as stated above, 4) when compared with a SF-8 survey methodology measuring a health-related QOL, the life-line methodology was more consistent with the mental health rather than the physical health domains, especially as related to identifying a personal meaning in one's life, and 5) relapsed patients combined characteristics of patients in both treatment and terminal stages of the disease.Study results reinforce the recognition that relapsed breast cancer patients have an unmet need for support systems tailored to respond to their individual psychological characteristics.

Gender as a context for interpreting the self‐directed learning experiences of prostate and breast cancer patients

This article reports the findings from a secondary analysis of the data from two qualitative studies conducted by the researcher regarding the self‐directed learning experiences of prostate and breast cancer patients. Of interest were possible differences in the descriptions of the participants’ experiences that appear to relate to gender. Semi‐structured interviews were conducted with 12 prostate cancer patients and 13 breast cancer patients. The resulting transcripts were analyzed using the constant comparative method. The same research process, geographic location and interview protocol were used for both studies. Differences that appear to relate to gender were found in regard to privacy, seeking connections, handling emotions, and perspectives on the personal impact of their self‐directed and cancer experiences.

Concordance between patients' desired and actual decision‐making roles in breast cancer care

This study explored breast cancer patients' preferences and experiences for participation in treatment decision making as well as the concordance between patients' actual and desired decision making. The interplay between depression, anxiety and decision-making preferences was also examined.A consecutive sample of primary breast cancer patients was recruited within a week of either surgery or the beginning of neo-adjuvant chemotherapy in two breast cancer centres in Germany. Women were asked to complete a self-explanatory questionnaire. Most patients (40.2%) of the 137 participants preferred the physician to make the treatment decision. A total of 63.4% were able to fulfil their preferred decision-making role. Breast cancer patients who wanted the physician to make the decision and patients who wanted to make the decision on their own were more likely to have their preferences met than patients who wished to share the decision (p < 0.01). Availability of treatment choice and the level of depression influenced the preferred decision-making preference. Limited concordance between desired and actual decision making of patients with collaborative decision-making preferences suggests the need for better communication and physician training on shared decision making.

User-Centered Research on Breast Cancer Patient Needs and Preferences of an Internet-Based Clinical Trial Matching System

Background Internet-based clinical trial matching systems have the potential to streamline the search process for women with breast cancer seeking alternative treatments. A prototype system was developed to leverage the capabilities of a personal health record system for the purpose of identifying clinical trials.Objective This study examines how breast cancer patients perceive and interact with a preliminary version of an Internet-based clinical trial matching system, while taking into account the demands of diagnosis and treatment decision making.Methods Breast cancer patients participated in small group discussions and interacted with the prototype website in a two-phase qualitative research process. The first phase explored the experience of breast cancer patients (n = 8) with treatment decision making, initial responses to the idea of Internet-based clinical trial matching systems, and reactions to the prototype site. In the second phase, a different set of breast cancer patients (n = 7) reviewed revised website content and presentation and participated in a usability test in which they registered on the system and completed a personal health record to set up the matching process.Results Participants were initially skeptical of the prototype system because it emphasized registration, had a complicated registration process, and asked for complex medical information. Changing content and attending to usability guidelines improved the experience for women in the second phase of the research and enabled the identification of functionality and content issues, such as lack of clear information and directions on how to use the system.Conclusions This study showed that women felt favorably about the idea of using the Internet to search for clinical trials but that such a system needed to meet their expectations for credibility and privacy and be sensitive to their situation. Developers can meet these expectations by conforming to established usability guidelines and testing improvements with breast cancer patients. Future research is needed to verify these findings and to continue to improve systems of this nature.

Younger Breast Cancer Patients Experience More Chemotherapy-Related Serious Adverse Effects than Previously Reported

Younger Breast Cancer Patients Experience More Chemotherapy-Related Serious Adverse Effects than Previously Reported

Early psychological adjustment in breast cancer patients: A prospective study

Objective: A significant proportion of breast cancer patients experiences psychiatric morbidity in the first year after a breast cancer diagnosis and/or beginning of treatment. This study attempted to identify and understand the risk factors for developing such problems. Methods: A consecutive series of 87 patients, aged 40–75 years, was assessed prior to diagnosis of breast cancer and followed-up approximately 8 weeks after beginning of cancer treatment and again 9 months after first follow-up. Assessments included measures of psychiatric morbidity using the General Health Questionnaire (GHQ-12), coping style using the Mental Adjustment to Cancer (MAC) Scale, symptom attribution, beliefs about breast cancer, social support, socio-demographic and clinical variables. Results: A total of 85.1% of patients completed both follow-ups. Pre-diagnostically, 32.2% of breast cancer patients scored as a GHQ-12 ‘case.’ GHQ scores fell significantly between pre-diagnostic and both post-diagnostic assessments, especially in women who had thought they had cancer. Predictors of psychological morbidity at first follow-up included pre-diagnostic GHQ-12 score, lack of social support and feelings of ‘personal responsibility/avoidance.’ GHQ-12 ‘caseness’ at second follow-up was predicted by lack of social support alone. Conclusions: Overall, psychiatric morbidity is higher prior to, than following, a definitive diagnosis of breast cancer. Early reactions of this kind are predictive of post-treatment adjustment. However, only the presence of social support in this study seems to be associated with successful adjustment in the first year following a breast cancer diagnosis. Women at increased risk of psychological morbidity after a breast cancer diagnosis may be thus identifiable and targeted therapeutically.

Breast reconstruction among inner city women with breast carcinoma.

Despite the known benefits of breast reconstruction, the numbers of patients undergoing breast reconstruction remains lower than expected. The goal of this study was to survey systematically the experience of inner city breast cancer patients with regard to breast reconstruction in an urban public hospital setting. Between July 1999 and April 2000, 60 patients attending the Kings County Hospital Center Outpatient Breast Cancer Clinic were enrolled in this study. A multidimensional questionnaire was designed to explore the factors that determine breast reconstruction among inner city women. Demographic analysis failed to show any difference in education, insurance status, and economics between women who undergo breast reconstruction (N = 11) and nonreconstructed patients (N = 49). Patients who have undergone reconstruction are satisfied with their results. Reconstructed women have a higher rating of satisfaction with their sex life than nonreconstructed women (p = 0.041). The women without breast reconstruction had a tendency toward more embarrassment when undressing in front of a partner and lower partner satisfaction with their bodies. The most commonly sited reason patients did not undergo breast reconstruction was the lack of knowledge about breast reconstruction before mastectomy. This emphasizes the importance of educating patients on all the options in the management of breast carcinoma.

Psychological Stress, Adjustment and Cross-Cultural Considerations in Breast Cancer Patients

There is a dearth of information regarding the psychological experience of breast cancer in the South African context, particularly within the black population. Existing psychological studies have focused mainly on the healthy breast or instances of non-malignant disease, largely within the white population from a Western perspective. This study addressed some of these concerns and examined and compared the nature and degree of psychological distress with reference to specific variables experienced by South African black and white breast cancer patients. Fifty women, comprising two equal groups of 25 black and white breast cancer patients were assessed and compared in terms of their levels of depression, body image dysphoria and styles of psychological adjustment during the course of their post-surgical chemotherapy treatment. There were several differences in the psychological experiences of black and white breast cancer patients. Most of the black patients were found to experience greater levels of somatisation, depression and body image dysphoria and tended to utilise less adaptive styles of adjustment to their disease. The only measure on which both groups more closely resembled each other was that of anxiety. The greater levels of psychological distress reported by most of the black patient group may be due to traditional cultural reasons which possibly predispose them to suppress emotions or somatise them rather than display these outwardly, and because of a lack of knowledge and of psycho-oncological services for this group. These patients could be regarded as being at high risk for elevated distress levels requiring psychological intervention.

When the diagnosis is cancer: patient communication experiences and preferences.

Discrepancies exist between reported experiences of patients when they have been given a diagnosis of cancer, published guidelines for telling a diagnosis, and patterns of communication patients rate as favorable. Several studies have identified what happened and what is important to cancer patients when told their diagnosis, but no studies have addressed subsequent communications concerning the implications of the diagnosis and treatment choices. This study extended previous research by investigating the experiences and preferences for communication about diagnosis, prognosis, and treatment of patients diagnosed with breast cancer or melanoma. A self-report questionnaire was designed for this study based on previous research and qualitative data generated from focus groups. Patients with breast cancer or melanoma answered questions about their experiences with communication at the time of diagnosis and concerning prognosis, treatment and related issues. Comparisons were made between patient experiences, preferences and published guidelines. Differences between the experiences of breast cancer and melanoma patients were tested and the relationship between communication and subsequent psychological adjustment to cancer was assessed. Patient preferences for communication during diagnostic consultation were not always consistent with published guidelines. Type of cancer did not significantly affect patient preferences. Psychological adjustment was related to patient ratings of the quality of doctor discussion about treatment options, but not about the diagnosis of cancer and its implications. Patients who wanted more emotional support at the time of diagnosis subsequently experienced poorer psychological adjustment. The differences in patient preferences show that a list of prescriptions for how to disclose a cancer diagnosis is too simplistic. Guidelines for clinicians should be derived from patient-based data rather than be limited only to clinical opinion. Guidelines concerning communication at the time of diagnosis also need to address discussions concerning the implications of the diagnosis and making treatment decisions.