Toni Musiello

Decision making, psychological wellbeing and psychosocial outcomes for high risk women who choose to undergo bilateral prophylactic mastectomy – A review of the literature

A bilateral prophylactic, or preventative, mastectomy (BPM) for women at high risk of developing breast cancer (BC) can reduce their risk of developing the disease by up to 90% (relative risk reduction). An increasing number of women, including young women, are taking up this option. However, there is a dearth of information for younger women (under 40 years) choosing preventative mastectomy. In fact, no studies to date have specifically focused on younger womens experiences of a BPM and investigated their informational needs. The purpose of this review is to report on the current literature surrounding the psychological experience of a BPM and the informational needs for women at high risk of developing BC with a particular emphasis on younger women. Research has highlighted a range of psychological outcomes linked to preventative mastectomy, including positives such as reduced anxiety and negatives including impaired body image and sexuality. The literature strongly suggests women want more information surrounding BPM, particularly related to the after effects of the surgery, and the impact on their psychological wellbeing. Research method limitations and reporting has resulted in conflicting conclusions, making it difficult for women to be well informed. In particular, there has been little focus on the experiences and needs of younger women opting for BPM. Due to the unique needs of younger women and an increase in BPM rates for younger women, it is imperative that the needs of this group are addressed. Together these findings provide justification and recommendation for further research in this area.

Women's preferences for contralateral prophylactic mastectomy following unilateral breast cancer: What risk-reduction makes it worthwhile?

OBJECTIVES Contralateral prophylactic mastectomy (CPM) reduces the risk of contralateral breast cancer (BC) following unilateral BC, but may not increase survival in BRCA1/2 mutation negative women. Despite this, and the risk for adverse physical and psychological impact, uptake is increasing in BRCA1/2 mutation negative women. We aimed to quantify the degree of reduction in lifetime contralateral BC risk women required to justify CPM, and to explore demographic, disease and psychosocial predictors of preferences using Protection Motivation Theory (PMT) as a theoretical framework. Reasoning behind preferences was also examined. MATERIALS AND METHODS 388 women previously diagnosed with unilateral BC, of negative or unknown BRCA1/2 status, were recruited from an advocacy group research database. Two hypothetical risk trade-off scenarios were used to quantify the reduction in lifetime contralateral BC risk that women judged necessary to justify CPM, using a 5% and 20% baseline. Demographic, disease and PMT measures were assessed using a questionnaire. RESULTS Most women required their risk to be more than halved from a 5% or 20% baseline to justify CPM. Polarised preferences were also common, with some women consistently accepting or refusing CPM independent of risk/benefit trade-offs. Preferences were associated with coping self-efficacy and having a prior CPM. Explanations for judging CPM worthwhile included reducing or eliminating contralateral BC risk, attaining breast symmetry and reducing worry. CONCLUSION Risk-reduction preferences were highly variable. Decisive factors in womens preferences for CPM related to clinical, psychological and cosmetic outcomes, but not to demographic or disease characteristics.

Detecting Distress: Introducing Routine Screening in a Gynecologic Cancer Setting

BACKGROUND: Cancer results in a wide range of challenges that contribute to patient distress. Detecting distress in patients can result in improved patient outcomes, and early intervention can avoid patients having unmet needs. OBJECTIVES: The aims were to determine the prevalence of distress in patients with gynecologic cancers, identify specific problems, and explore staff perceptions of distress screening. METHODS: A mixed‐methods design was used. Quantitative data were collected on distress levels and problems. Qualitative interviews were conducted with healthcare professionals. FINDINGS: Sixty‐six percent of women scored 4 or greater on the Distress Thermometer, which was used as the indicator for follow‐up or referral. A third reported low distress, and the same proportion was highly distressed. The top five problems identified by participants were nervousness, worry, fears, fatigue, and sleep problems.

A pilot study of routine screening for distress by a nurse and psychologist in an outpatient haematological oncology clinic

AIM To explore the: 1) prevalence of distress, type of problems experienced by haematological patients, and referrals for supportive care; 2) effect of demographic and clinical variables on distress, and 3) effect on the time of health professionals conducting the screening in the ambulatory chemotherapy setting. METHODS Participants completed the National Comprehensive Cancer Network Distress Thermometer and Problem List and had a follow-up screening discussion with a health professional. RESULTS Of 68 participants, 40% reported significant distress (≥4) on the Distress Thermometer (mean 3.2, SD 2.4). All patients reported physical problems and 72% reported emotional problems-the major contributors to distress and to time spent with the health professional. Distress was unrelated to age, gender or cancer type. Patients were less likely to have significant distress at the end of treatment than at the beginning (OR=0.15, 95% CI: 0.03; 0.72,). Forty patients (59%) were referred to supportive services. The psychologist spent less time with patients compared to the nurse (18 vs 48min, p<0.001). The more emotional problems reported, the greater the time spent with the patient (rs=0.34, p=0.009). CONCLUSIONS Nurses can appropriately screen for distress and address significant distress reported by haematology patients undergoing chemotherapy without over burdening the nurse or patient.

Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care

Purpose: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. Methods: An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. Results: Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed. Conclusion: Participants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience—providing the vital “link” that people described as missing from their survivorship care.

Psychological and Psychosocial Care of a Pregnant Woman with Cancer

This chapter describes the psychological and social issues for younger women diagnosed with cancer. In particular, we highlight the issues raised by women who have experienced a cancer diagnosis during pregnancy. The information is to assist health professionals to communicate effectively with their patient and raise awareness of the impact that the clinician interaction and behaviour can have on these women. Given that breast cancer is the most common malignancy associated with pregnancy, much of the information presented is based on the experiences of women diagnosed with breast cancer whilst pregnant. Whilst treatment between cancers will differ, the psychosocial issues can be similar. The areas highlighted will include how motherhood impacts on a diagnosis of cancer, the isolation felt by these women, the information and support they require and the importance of health professionals remaining impartial in their discussions with these women.

A pilot study to assess the validity of the DASS-21 subscales in an outpatient oncology population

Given the high prevalence of emotional disorders within patients with cancer, identifying these comorbidities is essential in providing patient centric care within a multidisciplinary team environment. The Depression Anxiety Stress Scale Short Form (DASS)‐21 is an empirically developed self‐report measure which assesses anxiety, depression and stress. The conceptual basis of DASS is a tripartite model comprising 3 subscales: anxiety (DASS‐A—autonomic arousal, physiological hyperarousal, and situational anxiety), depression (DASS‐D—anhedonia, hopelessness, and dysphoria) and stress (DASS‐S—nondiscriminating anxiety and depression items that predominantly consisted of tension, nervous arousal, and irritability) and provides a global measure of psychological distress. Because of the positive psychometric properties and ease of use, the DASS‐21 is increasingly used in a cross section of oncology settings to assess psychological distress but has not been validated in the cancer population. Our study aimed to examine the assumptions of the structure of the DASS‐21 within a cancer population actively receiving chemotherapy treatment in an outpatient setting and evaluate its psychometric properties.