Belinda Thewes

Fertility- and Menopause-Related Information Needs of Younger Women With a Diagnosis of Early Breast Cancer

PURPOSE The use of chemotherapy and endocrine therapies in the treatment of premenopausal women carries with it reproductive and gynecologic implications that young women may find distressing and discordant with plans for childbearing. This multicenter study aimed to investigate fertility- and menopause-related information needs among young women with a diagnosis of early-stage breast cancer. PATIENTS AND METHODS Two hundred twenty-eight women with a diagnosis of early-stage breast cancer who were aged 40 years or younger at diagnosis and who were 6 to 60 months after diagnosis were entered onto the trial. Participants completed a mailed self-report questionnaire that included a purposely designed fertility- and menopause-related information needs survey and standardized measures of distress, anxiety, quality of life, menopausal symptoms, and information-seeking style. RESULTS Seventy-one percent of participants discussed fertility-related issues with a health professional as part of their breast cancer treatment, and 86% discussed menopause-related issues. Consultation with a fertility or menopause specialist was the most preferred method of obtaining this information. Receiving fertility-related information was rated as being significantly more important than receiving menopause-related information at time of diagnosis (P < .001) and at treatment decision making (P = .058). Receiving menopause-related information was rated as being significantly more important than receiving fertility-related information during adjuvant treatment (P < .05), at completion of adjuvant treatment (P < .001), and during follow-up (P < .001). Common questions, sources of information, and correlates of perceived importance were identified. CONCLUSION The results of this study suggest that younger women have unmet needs for fertility- and menopause-related information and provide preliminary empirical data to guide the development of better fertility- and menopause-related patient education materials for younger women with a diagnosis of early breast cancer.

Fear of cancer recurrence: a systematic literature review of self-report measures.

Prior research has shown that many cancer survivors experience ongoing fears of cancer recurrence (FCR) and that this chronic uncertainty of health status during and after cancer treatment can be a significant psychological burden. The field of research on FCR is an emerging area of investigation in the cancer survivorship literature, and several standardised instruments for its assessment have been developed.

Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer

Background:Fertility is a priority for many young women with breast cancer. Women need to be informed about interventions to retain fertility before chemotherapy so as to make good quality decisions. This study aimed to prospectively evaluate the efficacy of a fertility-related decision aid (DA).Methods:A total of 120 newly diagnosed early-stage breast cancer patients from 19 Australian oncology clinics, aged 18–40 years and desired future fertility, were assessed on decisional conflict, knowledge, decision regret, and satisfaction about fertility-related treatment decisions. These were measured at baseline, 1 and 12 months, and were examined using linear mixed effects models.Results:Compared with usual care, women who received the DA had reduced decisional conflict (β=−1.51; 95%CI: −2.54 to 0.48; P=0.004) and improved knowledge (β=0.09; 95%CI: 0.01–0.16; P=0.02), after adjusting for education, desire for children and baseline uncertainty. The DA was associated with reduced decisional regret at 1 year (β=−3.73; 95%CI: −7.12 to −0.35; P=0.031), after adjusting for education. Women who received the DA were more satisfied with the information received on the impact of cancer treatment on fertility (P<0.001), fertility options (P=0.005), and rated it more helpful (P=0.002), than those who received standard care.Conclusion:These findings support widespread use of this DA shortly after diagnosis (before chemotherapy) among younger breast cancer patients who have not completed their families.

Communicating in a multicultural society II: Greek community attitudes towards cancer in Australia

Background: Open and full disclosure of information regarding diagnosis and prognosis is the prevailing approach to cancer patients. However, such a view appears contrary to the preferences of many ethnic groups in Australia.

What survival benefits do premenopausal patients with early breast cancer need to make endocrine therapy worthwhile

BACKGROUND Adjuvant endocrine therapies such as tamoxifen, goserelin, and oophorectomy improve survival for premenopausal women diagnosed with early-stage breast cancer. However, these treatments often result in menopausal symptoms, sexual dysfunction, permanent infertility, or the need to delay pregnancy. We aimed to quantify the survival gains that premenopausal patients with early-stage breast cancer require to justify the side-effects and inconvenience of adjuvant endocrine treatments. METHODS Participants consisted of 102 women who had been diagnosed with early-stage (stage I-II) breast cancer 6-60 months previously, who were aged 40 years or younger at diagnosis, and who had been treated for a minimum of 3 months with endocrine therapy (67 with tamoxifen alone, seven with goserelin alone, and 28 with tamoxifen and goserelin or oophorectomy). 76 patients also received chemotherapy, and 75 received radiotherapy. Participants attended a face-to-face patient-preference interview, in which they were presented with four hypothetical clinical scenarios that were used to quantify the gains in survival rate and life expectancy that women judged necessary to make their endocrine therapy worthwhile. They also completed a questionnaire on standard psychological measures. FINDINGS About half of participants thought that adjuvant endocrine therapy was worthwhile for an absolute gain in survival of 2% from a baseline of either 65% or 85%, and for a gain in life expectancy of 3 months from a baseline of 5 years and of 6 months for a baseline of 15 years. Women who had had more severe endocrine side-effects required larger gains to make endocrine therapy worthwhile (univariate p=0.02, multivariate p=0.04). INTERPRETATION Modest gains in survival are sufficient to make adjuvant endocrine treatment worthwhile for premenopausal women with early-stage breast cancer. Knowing and incorporating what women think should enhance shared decision-making.

Assessment of Unmet Needs Among Survivors of Breast Cancer

Abstract Published literature on survivors of breast cancer suggests that a small subset of survivors will develop moderate-to-severe psychopathology. The current study aimed to develop and pilot a needs-assessment questionnaire specifically for survivors of the disease. An initial qualitative phase generated items for inclusion in a “Survivors Module” needs-assessment instrument. In the second phase, 95 survivors in remission were asked to complete the Survivors Module as well as measures of depression and anxiety, menopausal symptoms, and quality of life. Two weeks later, they completed the Survivors Module again to establish test-retest reliability. Initial pilot testing of the Survivors Module suggests that the module is a valid and reliable instrument, although further validation and analysis of its psychometric properties using a larger sample would be warranted. A large minority of survivors were found to have many unmet psychosocial needs in a number of areas, particularly in the domain of needs regarding information and medical communication. Unmet needs for help in coping with breast cancer also were prevalent.

Fear of cancer recurrence: a theoretical review and novel cognitive processing formulation

PurposeFear of cancer recurrence (FCR) is prevalent among survivors. However, a comprehensive and universally accepted theoretical framework of FCR to guide intervention is lacking. This paper reviews theoretical frameworks previously used to explain FCR and describes the formulation of a novel theoretical framework for FCR.MethodsA systematic review of the literature was undertaken to identify conceptual frameworks or theories applied to FCR. MEDLINE, PubMED, CINAHL, AMED, PsycINFO and Web of Science were searched. Identified conceptual frameworks were reviewed for strength of evidence supporting their validity.ResultsOf 558 papers initially identified, 16 made reference to six different conceptual frameworks relating to FCR. The most comprehensive and evidence-based theoretical approach is the Common Sense Model (CSM). Other approaches have limited evidence supporting their application to FCR. Two theoretical approaches developed in the context of emotional disorders that appear to be highly relevant to FCR: the Self-Regulatory Executive Function (S-REF) model and Relational Frame Theory were combined with the CSM to produce a novel cognitive processing account of FCR.ConclusionsFew conceptual frameworks have been used consistently to guide FCR research, and not all frameworks are empirically well supported, suggesting that further discussion regarding the conceptualisation of FCR is needed. The novel theoretical framework for FCR presented highlights the multidimensional nature of FCR and the importance of cognitive processing and metacognitions in the development and maintenance of FCR.Implications for Cancer SurvivorsThe novel theoretical formulation of FCR outlined here provides a much-needed comprehensive framework to further investigate and address FCR in cancer survivors.

Current approaches to managing fear of cancer recurrence; a descriptive survey of psychosocial and clinical health professionals

Fear of cancer recurrence (FCR) is common amongst cancer survivors and help with this problem is the most frequently reported unmet need in this population. This study investigated how FCR is perceived and managed by clinical health professionals (medical and nursing staff) and psychosocial professionals in oncology settings.

Receiving information on fertility- and menopause-related treatment effects among women who undergo hematopoietic stem cell transplantation: Changes in perceived importance over time

Hematopoietic stem-cell transplantation (HSCT) is associated with high rates of gonadal failure, which is distressing for younger patients desiring to start a family. The perceived importance and optimal timing of discussing fertility- and menopause-related information with women undergoing aggressive treatment such as HSCT is not well defined. Questionnaires were sent to 532 patients who underwent HSCT between January 1987 and September 2004 at the ages of 16 to 50 years. The questionnaire assessed demographic data, the need for fertility- and menopause-related information at various times during treatment, and standardized measures of anxiety, quality of life, and menopausal symptoms. The return rate was 40.2%, with 196 patients participating. Of these, 38% reported that they had discussed fertility-related issues with health-care providers since their diagnosis; 54% had discussed menopause-related issues. At the time of diagnosis, participants considered receiving information on fertility and menopause as being of equal importance. However, after HSCT, information about menopause was considered more important than information on fertility (P < or = .0001). Being <40 years, being childless, desiring to bear children in the future, and having a high score on the State-Trait Anxiety Inventory (STAI) correlated with higher ratings of importance for both fertility- and menopause-related information. Our results suggested that healthcare providers should provide information on fertility and menopause repeatedly throughout the treatment period, and that menopause-related information should be reemphasized after HSCT. Such counseling is crucial for patients who are young and childless.

Screening for psychological distress and vulnerability factors in women at increased risk for breast cancer: A review of the literature

Women with a family history of breast cancer are at significantly increased risk of psychological distress, and there are potential benefits to routine psychological screening in women attending familial cancer clinics. Standard psychological screening measures may have limited sensitivity and specificity. Sensitivity and specificity of screening may be improved if screening includes additional routine assessment of empirically demonstrated risk factors for psychological distress specific to this population. To this end, we undertook a systematic literature review to identify demonstrated risk factors for psychological distress amongst high-risk women. Published studies of unaffected women with a family history of breast cancer were included if they: assessed sociodemographic, family history or psychological correlates of psychological distress; and included psychological and emotional outcomes as primary outcome measures. A total of 16 studies met the inclusion criteria. Several factors are empirically demonstrated risk factors in this population: (i) overestimating ones risk of developing breast cancer by more than 50%; (ii) mothers diagnosis with breast cancer; (iii) death of parent from breast cancer; (iv) having acted as caregiver for mother with breast cancer; and (v) having experienced a breast-cancer-related life event in the past year. A screening tool that incorporates these risk factors is presented and its potential role in familial cancer clinics is discussed.