Patients' and doctors' views and experiences of the patient safety trajectory of breast cancer care.

INTRODUCTION: Successful breast cancer outcomes can be jeopardised by adverse events. Understanding and integrating patients' and doctors' perspectives into care trajectories could improve patient safety. This study assessed their views on, and experiences of, medical error and patient safety. METHODS: A cross-sectional, quantitative 20-40 item questionnaire for patients attending Cork University Hospital Cancer Centre and breast cancer doctors in the Republic of Ireland was developed. Domains included demographics, medical error experience, patient safety opinions and concerns. RESULTS: 184 patients and 116 doctors completed the survey. Of the doctors, 41.4% felt patient safety had deteriorated over the previous five years and 54.3% felt patient safety measures were inadequate compared to 13.0% and 27.7% of patients respectively. Of the 30 patients who experienced medical errors/negligence claims, 18 reported permanent or long-term physical and emotional effects. Forty-two of 48 (87.5%) doctors who experienced medical errors/negligence claims reported emotional health impacts. Almost half of doctors involved in negligence claims considered early retirement. Forty-four patients and 154 doctors didn't experience errors but reported their patient safety concerns. Doctors were more concerned about communication and administrative errors, staffing and organisational factors compared to patients. Multiple barriers to error reporting were highlighted. CONCLUSION: This is the first study to assess patients' and doctors' patient safety views and medical error/negligence claims experiences in breast cancer care in Ireland. Experience of medical error/negligence claims had long-lasting implications for both groups. Doctors were concerned about a multitude of errors and causative factors. Failure to embed these findings is a missed opportunity to improve safety.

Breast Cancer and Hair Loss: Experiential Similarities and Differences in Men's and Women's Narratives.

BACKGROUND: There are relatively few studies comparing men's and women's breast cancer experiences. Furthermore, men's experiences of cancer treatment-induced alopecia have received scant academic attention compared with those of women. OBJECTIVE: To explore experiences of treatment-induced alopecia in both sexes and highlight ways in which they might be supported when undergoing breast cancer treatment. METHODS: Qualitative interviews and photographic data taken from 2 separate experiential inquiries were analyzed together, focusing on references made to treatment-induced alopecia in women's and men's breast cancer accounts. RESULTS: Hair loss was described as distressing by both sexes, affecting gendered identities and relationships. Men typically discussed loss of body hair, whereas women rarely referred to body hair explicitly, underlining gendered aspects of their experiences. Differences were also noted in coping strategies, with men using humor and asserting their masculinity. Women were better able to disguise hair loss, whereas men were forced to reveal their hairlessness. CONCLUSIONS: The findings contribute a nuanced understanding of the experience of treatment-induced alopecia for both men and women, which will help to improve their care during cancer treatment. IMPLICATIONS FOR PRACTICE: Healthcare professionals should provide information about the possible implications of cancer-related alopecia for identities and social relationships for both sexes. Highlighting marked gender differences in cancer-related hair loss, advice and support specific to men's needs would be particularly beneficial, enabling greater gender equality in clinical practice. Understanding the coping strategies employed by both sexes in relation to hair loss will help healthcare professionals to identify and address any underlying patient distress.

Assessing preferences for receiving supportive care resources among patients seen at a Breast Care Center.

BACKGROUND: Patients with breast cancer or at high risk for breast cancer have supportive care needs. Although cancer centers offer social, psychological, and other support to these patients, these services are not always utilized, and patients continue to report unmet supportive care needs. Reasons for non-utilization of these services have not been well documented. In this analysis, we examine patient reasons for service non-utilization and evaluate patients' interest in receiving information about and paying for other supportive care services. METHODS: Study participants were contacted by email 7-14 months following appointments at the University of California, San Francisco (UCSF) Breast Care Center (BCC) and were invited to complete a 26-question survey about supportive care utilization at UCSF. RESULTS: In total, 195 patients (45%) completed surveys. Of these, 68% had breast cancer. Among patients with breast cancer, fewer than half completed appointments with psychological services. Lack of self-perceived need was the primary reason patients did not pursue psychological services. Overall, 61% of participants were interested in learning more about psychological services, 27% in nutrition counseling, and 20% in exercise counseling. Participants were more interested in individual counseling than in group counseling but were less interested in paying for services. CONCLUSION: Patients often feel that they do not need supportive services. Breast cancer patients are interested in learning more about psychological services, exercise counseling, and nutrition counseling. Although many cancer centers offer group coaching and counseling sessions on these topics, patients may be more willing to engage in individual counseling.

Delayed presentation, diagnosis, and psychosocial aspects of male breast cancer.

INTRODUCTION: Male breast cancer is uncommon, delay in seeking medical attention often results in late presentation and poor prognosis. METHODS: Retrospective review of a prospectively maintained database was performed. Patients who were still having regular follow-up were contacted for telephone interview. RESULTS: In this study, 56 male breast cancer patients were treated in our center from January 1998 to December 2018, accounting for 0.88% of all breast cancers treated during the same period of time. Median age of onset was 61 years old (Range: 33-95). In this study, 6 (10.7%) patients presented with distant metastasis at the time of diagnosis and received palliative systemic treatment only. And, 50 patients were surgically treated and all had mastectomy. Axillary dissection was performed in 36 (72%) patients, while sentinel node biopsy was performed in 14 (28%) patients. Median tumor size was 23 mm (2-100 mm). A Majority were diagnosed with invasive carcinoma (NOS), while 38 (67.8%) patients were node positive.Here 36 (64.3%) patients were alive at the time of the study, 31 (86.1%) patients responded to the telephone interview. More than 90% of our patients expressed various degrees of embarrassment at the time of breast symptom onset. Similarly, more than 90% of these patients experienced embarrassment while waiting in the breast center with predominant female patients. Most patients (N = 26) were not aware that breast cancer can occur in men prior to the diagnosis. Median duration from symptoms to the first medical consultation was 12.4 months (1-120 months). CONCLUSION: Male breast cancer is rare and patients usually present late, Lack of knowledge, public education, and embarrassment are the important related factors.

Unmet information needs of men with breast cancer and health professionals.

OBJECTIVE: Male breast cancer (MBC) is rare. Information about breast cancer is usually designed for female patients. However, in males this disease and some side effects differ from its female counterpart. Therefore, there is a need for male-specific information. The aim was to assess unmet information needs of (a) MBC patients and (b) health professionals. METHODS: Dutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to participate in focus groups and/or complete a paper-based questionnaire on information needs. In addition, an online questionnaire on information needs was sent to health professionals involved in MBC patient care. RESULTS: In three focus groups with MBC patients (N = 12) and partners (N = 2) the following unmet information themes were identified: patients' experiences/photographs, symptoms, (delay of) diagnosis, treatments, side effects, follow-up, psychological impact/coping, genetics and family, research and raising awareness. 77 of 107 MBC patients (72%) completed the questionnaire: most patients lacked information about acute (65%) or late (56%) side effects, particularly sexual side effects. Among health professionals, 110 of 139 (79%) had searched for MBC-related information, specifically: patient information, anti-hormonal therapy, genetic testing, research, and psychosocial issues. CONCLUSIONS: Unmet information needs in MBC patients and health professionals were identified. Specific information on MBC should be developed to improve timely diagnosis, quality of life, treatment, and survival. A targeted website is an ideal tool to meet these needs. Therefore, we integrated these results into a user-centered design to develop an informative website, www.mannenmetborstkanker.nl.

Understanding breast cancer survivors' financial burden and distress after financial assistance.

PURPOSE: Little is known about how breast cancer may impact survivors' financial well-being. This study aims to investigate the financial status, burden, and opinions of breast cancer survivors who received short-term financial assistance, emotional support, and resource navigation from a community organization during treatment. METHODS: Clients previously served by the community organization were mailed a 16-question survey (n = 751) to elicit their perspective on financial status and burden before, during, and after diagnosis and treatment along with general demographic and opinion items. RESULTS: 136 surveys (18.1%) were returned yielding 118 (15.7%) suitable for analyses. Clients' average age was 54.3 years. Most were female (99.2%), Caucasian (66.1%), and diagnosed with Stage 1 or 2 breast cancer (58.5%). Clients reported significantly worse (p < 0.001) financial status after being diagnosed compared to before diagnosis. Financial distress was highest during cancer treatment (mean = 3.92, SD = 0.85), lowest prior to treatment (mean = 2.48, SD = 1.05), and remained high after treatment (mean = 3.59, SD = 1.05). Those with higher distress after treatment were significantly (p = 0.01) more likely to report lower social support during treatment. CONCLUSIONS: Breast cancer survivors reported worsening financial status and distress after being diagnosed and during treatment despite receiving short-term financial assistance, emotional support, and resource navigation. Survivors' financial distress after treatment remained higher than before treatment. However, most felt receiving financial assistance improved their quality of life and made them feel more in control of financial decision-making. Breast cancer survivors who feel they have low social support during treatment may feel higher financial distress posttreatment.

"My Husband Has Breast Cancer": A Qualitative Study of Experiences of Female Partners of Men With Breast Cancer.

BACKGROUND: Relatives of patients with cancer are at risk of experiencing changes to their everyday life, health, and quality of life. Partners of men with breast cancer may face certain challenges regarding their need for information, care, and support. OBJECTIVE: The purpose was to explore the experiences of the partners of men with breast cancer in relation to care, information, and emotional support and to explore how men with breast cancer impact the partners' everyday life. METHOD: This was a qualitative study based on individual interviews applying a phenomenological-hermeneutical analysis. RESULTS: Four themes were identified in the 12 female partners' narratives: a wall of ignorance, being seen is not a matter of course, emotional stress affects everyday life, and side effects strain the couples' relationship. CONCLUSION: The female partners' need for information on male breast cancer (MBC) is not sufficiently met because of lack of and poorly communicated information on the topic. The female partner assumes the role of advocate, actively seeking information when in contact with health professionals. Daily life is negatively affected by a lack of acknowledgement of the impact of MBC on their lives and needs by their social networks or health professionals. IMPLICATIONS FOR PRACTICE: Female partners have individual care, information, and emotional support needs that may differ from those of their male partner with breast cancer. Health professionals must improve communication with patients and relatives as there are lack of knowledge available regarding MBC and lack of evidence-based guidelines.

Transitional experience of men with breast cancer from diagnosis to survivorship: An integrative review.

PURPOSE: The care needs, experiences, and physical and psychological health of women with breast cancer are well-documented, but missing is the discussion of illness and management experiences of men with breast cancer. To explore and understand the nature and complexity of transitional experiences, from the time of receiving the diagnosis to the survivorship of men with breast cancer. METHODS: An integrative review was conducted according to Whittemore and Knafl's methodology. Literature was searched in seven scientific and two grey literature databases using mesh terms "breast cancer", "men", "experiences" and "nursing". Of 1013 screened articles, 17 qualitative, quantitative, and mixed methods studies and research reviews met the inclusion criteria. The studies were critically appraised using mixed methods appraisal tool and rated as high and low quality. The data was extracted using literature summaries and synthesized using thematic, descriptive, and interpretive analysis. RESULTS: Nine themes captured the transitional experience at the diagnosis, management, and survivorship stages. Gender inequalities and stigmatizations at personal, health care, and social and community levels negatively influence men's experiences. CONCLUSIONS: The gender stigmatizations present at personal, health care, and social and community levels greatly influence men's experiences of breast cancer. To resolve gender inequalities in breast cancer management, the nurses should focus equally on the needs of men and women with breast cancer. The needs of men entail reducing health care and social stigmatizations, gender specific information and management, and opportunities to participate in support groups.

Social Support of Male Breast Cancer Patients-a Mixed-Methods Analysis.

The aim of this study is to explore the social support of male breast cancer patients (MBCP) in Germany. In particular, three aspects of social support focus on (a) the used resources within the social environment, (b) the received support, and (c) the differences of used social support between MBCP. A mixed-methods design is applied including data of qualitative interviews (N = 27 MBCP) and a written questionnaire (N = 100 MBCP). MBCP use different resources of support from their social environment like partners, family, friends, colleagues, other breast cancer patients, and medical experts. Mostly, MBCP receive emotional and informational support. They often receive emotional support from their partners and informational support from medical experts. Different types of social support usage can be identified dependent on age, occupation, and severity of disease. The older the patients and the less the disease severity, the less social support MBCP use. Within cancer care, partners and the closer social environment should be included more as they are a key resource for MBCP. As health-care professions might also be an important resource of support for MBCP, further research should examine this resource.

Expectations versus reality: The impact of men's expectancy violations in conversations with healthcare providers about BRCA-related cancer risks.

OBJECTIVE: To investigate the experiences of men with germline pathogenic BRCA variants or who have a first-degree family member who tested positive for BRCA regarding their interactions with healthcare providers about their cancer risks. METHODS: 25 phone interviews were conducted with men at risk for hereditary cancer. Data were analyzed using an iterative approach where emergent themes were compared to existing research and theories. RESULTS: Informed by Expectancy Violation Theory (EVT), a model for understanding men's experiences when interacting with healthcare providers about their BRCA-related cancer risks-comprised of three stages including expectation, violation, and outcomes-was developed. CONCLUSIONS: These findings show the importance of men's basic expectations for patient-provider interactions and how violations of expectations impact perceptions, communication, and behavior. Outcomes of negative expectancy violations may impact not only men with BRCA-related cancer risks but also their family members. PRACTICE IMPLICATIONS: Healthcare providers can be mindful about the ways in which they positively and negatively violate patients' expectations. Patients can engage in self-advocacy behaviors, and advocacy organizations can design resources for patients and healthcare providers to encourage and support effective communication between providers, patients, and their family members.

Difficulties in histopathology diagnosis and treatment of depressive disorder of breast cancer in male - clinical case presentation.

Breast cancer is less common among men than among women (about 1 in 100) and it is considered a rare disease but the evolution is significantly influenced by depression and distress. We present the case of a 63-year-old patient that was diagnosed in another Clinic with squamous skin carcinoma, but, after complete resection in our Hospital, it was proven to be breast cancer. At diagnosis, computed tomography (CT) scan showed local disease. Adjuvant treatment, consisting in chemotherapy and radiotherapy, was administered. At the beginning of hormonal therapy, the patient had a new CT scan that showed liver and bone metastases. The patient started palliative hormonal treatment with bisphosphonates. The aim of the study was to highlight both the importance of early diagnosis and treatment and the aggressiveness of male breast cancer compared with female. Depressive disorder and social distress worsens the prognosis and quality of life. Male with breast cancer has identity difficulties, body image disturbances and secondary distress.

Men With a "Woman's Disease": Stigmatization of Male Breast Cancer Patients-A Mixed Methods Analysis.

Male breast cancer (MBC) is rare and known as a typical woman's disease. This study is part of the N-MALE project (Male breast cancer: patient's needs in prevention, diagnosis, treatment, rehabilitation and follow-up-care) and aims to investigate how MBC patients (MBCP) feel about suffering from a "woman's disease," what character the stigmatization has, and how it can be prospectively reduced. Therefore, a mixed methods design is applied including data of N = 27 qualitative interviews with MBCP and quantitative data of N = 100 MBCP. Findings identify a diverse picture, as stigmatization varies between contexts and patients: Most stigmatization concentrates on sexual stigmatization and ignorance of MBC and mostly occurs in cancer care systems and work-related contexts. The level of stigmatization varies with age and amount of treatment methods received, as reported within the created typology of different MBCP stigma types. To prospectively reduce stigmatization in MBCP, more publicity of MBC is needed, as well as gender-neutral communication and information material.

Surgical options for male breast cancer.

BACKGROUND: Male breast cancer (MBC) is a rare disease for which no randomised controlled trials (RCT) have been conducted to determine optimal surgical management. The available data have been reviewed to identify reasonable options and reveal areas in need of investigation. METHODS: All published series on the surgical management of MBC have been reviewed to determine approaches to treatment of the primary, the breast and the axilla together with the psychological sequelae of surgery. FINDINGS: Mastectomy is still the major surgical offer but a convincing case can be made for the use of neoadjuvant endocrine treatment in order to facilitate breast conserving surgery. Sentinel node biopsy has been successfully used for staging MBC although nomograms for prediction of nodal status are inadequately calibrated. There are psychological sequelae of mastectomy in males and as yet no evidence that the needs of those with MBC are being met. CONCLUSIONS: Collaborative studies are required so that men can participate in meaningful RCTs to provide an evidence-based rational foundation for the surgery of MBC.

Mediating Effects of Patients' Stigma and Self-Efficacy on Relationships Between Doctors' Empathy Abilities and Patients' Cellular Immunity in Male Breast Cancer Patients.

BACKGROUND Doctors' empathy is closely related to patients' health. This study aimed to examine whether patients' stigma and self-efficacy play a mediating role in the relationship between doctors' empathy abilities and patients' cellular immunity in male patients with breast cancer. MATERIAL AND METHODS Doctors' empathy scores and patients' demographic data, disease condition, stigma, and self-efficacy were measured. Patient T cell subset was tested at admission and 3 months after the operation and was compared by paired t test. The multivariate linear regression model was applied to analyze the factors influencing the immune index. Pearson correlation analysis and structural equation modeling were applied to explore the relationships among patients' stigma, self-efficacy, and cellular immunity and doctors' empathy abilities. RESULTS At the 2 time points, only the change in NK subset was statistically significant, while the changes in percentage of CD3+, CD4+, CD8+, and B cells were not statistically significant. The doctors' empathy abilities were negatively correlated with patients' stigma and were positively related to patients' self-efficacy. Patients' stigma was negatively related to NK subset, while self-efficacy was positively associated with NK subset. Patients' stigma and self-efficacy played a mediating role in the relationship between doctors' empathy abilities and patients' NK subset, and stigma had a stronger effect than self-efficacy. CONCLUSIONS Doctors' empathy abilities affected breast cancer patients' NK subset through their stigma and self-efficacy. The mental health of male breast cancer patients need more attention and empathy education needs to be improved.

Unmet needs of men with breast cancer.

Because of the rarity of male breast cancer (MBC) many men are unaware that the disease exists. This leads both to delay in presentation and severe distress after diagnosis concerning loss of masculinity and fear about the future. The informational and emotional support needs of men with breast cancer are often not met and many will have undiagnosed and untreated psychological morbidity. There is a pressing need for collaboration and the setting up national networks to improve both the treatment and quality of life of men with breast cancer.

Implementation of an Integrative Oncological Concept in the Daily Care of a German Certified Breast Cancer Center.

BACKGROUND: In recent decades the concept of integrative medicine has attracted growing interest in patients and professionals. At the Gemeinschaftskrankenhaus Havelhöhe (GKH), a hospital specialized in anthroposophical medicine, a breast cancer center (BCC) has been successfully certified for more than 5 years. The objective of the present study was to analyze how integrative strategies were implemented in the daily care of primary breast cancer patients. METHODS: Clinical, demographic, and follow-up data as well as information on non-pharmacological interventions were analyzed. In addition, BCC quality measures were compared with data of the National Breast Cancer Benchmarking Report 2016. RESULTS: Between 2011 and 2016, 741 primary breast cancer patients (median age 57.4 years) were treated at the GKH BCC. 91.5% of the patients showed Union for International Cancer Control (UICC) stage 0, I, II, or III and 8.2% were in UICC stage IV. 97% of the patients underwent surgery, 53% radiation, 38% had hormone therapy, and 25% received cytostatic drugs. 96% of the patients received non-pharmacological interventions and 32% received Viscum album L. THERAPY: Follow-up was performed in up to 93% of the patients 2 years after first diagnosis. Compared to nationwide benchmarking BCCs, the GKH BCC met the requirements in central items. CONCLUSIONS: The results of the present study show that integrative therapies offered by the concept of anthroposophical medicine can be implemented in the daily care and treatment of a certified BCC. However, as national guidelines on integrative concepts in oncology are missing, further studies are needed for a systematic evaluation of integrative treatment and care concepts in this field.

"Guys Don't Have Breasts": The Lived Experience of Men Who Have BRCA Gene Mutations and Are at Risk for Male Breast Cancer.

Men with BRCA1 or BRCA2 gene mutations are at increased risk of developing breast cancer and may have an indication for breast cancer screening using mammography. Since breast cancer is often viewed as a woman's disease, visibilizing and understanding men's experience of having a BRCA mutation and specifically, of screening for breast cancer through mammography, were the objectives of this research study. The theoretical framework of interpretive phenomenology guided the process of data collection, coding, and analysis. Phenomenology is both a philosophy and research method which focuses on understanding the nature of experience from the perspectives of people experiencing a phenomenon, the essence of and commonalities among people's experiences, and the ways in which people experience the world through their bodies. Data were collected via in-depth interviews with a purposive sample of 15 male participants recruited from the Male Oncology Research and Education (MORE) Program. This article reports findings about participants' use of gender-specific language to describe their breasts, awareness of the ways in which their bodies changed overtime, and experiences of undergoing mammograms. This study is the first to describe men with BRCA's perceptions of their breasts and experiences of mammography in a high-risk cancer screening clinic. This study sheds light on an under-researched area-breasts and masculinities-and could potentially lead to improved clinical understanding of men's embodied experiences of BRCA, as well as suggestions for improving the delivery of male breast cancer screening services.

Health-related quality of life in different states of breast cancer - comparing different instruments.

BACKGROUND: The prognosis of breast cancer has improved significantly during the last few decades increasing the interest in health-related quality of life (HRQoL). The aim of this study was to compare the HRQoL scores produced by different instruments and to shed light on their validity in various states of breast cancer by studying the association of cancer-related symptoms with HRQoL. MATERIAL AND METHODS: An observational, cross-sectional study of breast cancer patients treated in the Helsinki and Uusimaa Hospital District from September 2009 to April 2011. A total of 840 patients completed three HRQoL questionnaires: the EQ-5D-3L (including VAS), 15D and EORTC QLQ-30 and a questionnaire concerning sociodemographic factors. Patients were divided into five mutually exclusive groups: primary treatment (n = 118), recovery (6-18 months from diagnosis) (n = 150), remission (>18 months) (n = 382), metastatic disease (n = 176) and palliative care (n = 14). The association of HRQoL with sociodemographic and clinical factors and cancer-related symptoms, screened by the EORTC QLQ-30, was studied by multivariate modeling using stepwise linear regression analysis. RESULTS: HRQoL scores were the best at the time closest to diagnosis and deteriorated with disease progression. The EQ-5D had a pronounced ceiling effect with 40.8% of the respondents scoring 1 (perfect health) compared to 6% for the 15D and 5.6% for VAS. In regression analyses, pain, fatigue and financial difficulties were the most important predictors of lower HRQoL. The 15D showed better discriminatory power and content validity. The EORTC QLQ-C30 functioning deteriorated in advanced states of the disease with physical, social and role functioning being the most affected. Insomnia, fatigue and pain were the most commonly reported symptoms in all groups. CONCLUSIONS: Different HRQoL instruments produce notably different HRQoL scores. The EQ-5D has a pronounced ceiling effect. Pain and fatigue are the most common symptoms associated with poor HRQoL in all disease states.