Breast Cancer Network Australia Research Articles

Consumer experiences of shame in clinical encounters for breast cancer treatment. “Who do you think you are– Angelina Jolie?”

BackgroundShame is a powerful negative emotion that has the potential to affect health. Due to the intimate nature of breast cancer treatment and its impact on body image, it is hypothesised that shame may be experienced during treatment. The aim of this study was to explore shame experiences related to clinical encounters for breast cancer treatment. MethodsPeople with a lived experience of breast cancer were invited to anonymously share their stories of shame through an online survey. Using qualitative methodology, the stories were examined, and themes identified. ParticipantsParticipants were members of the consumer organisation Breast Cancer Network Australia. ResultsStories were contributed by 38 participants. Most (n = 28, 73.7 %) were >5 years post-diagnosis. Shame was experienced in a range of clinical settings (consulting rooms, wards, operating theatres, radiotherapy departments). They involved a different health professionals (oncologists, surgeons, nurses, radiation therapists, psychologists.)Five themes were identified: (1) Body shame (sub-themes: Naked/vulnerable and Weight), (2) Communication (subthemes: Lack of compassion/impersonal manner and Not listening), (3) Being blamed (subthemes: diagnosis and complications), (4) Feeling unworthy (subthemes: Burden to staff and Unworthy of care), (5) Judgement for treatment choices. ConclusionsShame can be experienced in a range of situations, from scrutiny of the naked body to comments from health professionals. The impact of these experiences is profound, and the feelings of shame are carried for many years. These findings can inform strategies to support consumers and educate health professionals with the aim of reducing harm related to cancer treatment.

Comorbidities and their management in women with breast cancer—an Australian survey of breast cancer survivors

PurposeBreast cancer survivors experience significant burden from comorbid chronic conditions, but little is known about how well these conditions are managed. We conducted a national survey of Australian breast cancer survivors to examine the burden of chronic conditions, their impact and care alignment with the principles of chronic condition management.MethodsA study-specific survey incorporated questions about chronic conditions using the Charlson Comorbidity Index (CCI), functional status using the Vulnerable Elders Survey (VES) and perceived quality of care for cancer and non-cancer conditions using the Patient Assessment of Care for Chronic Conditions Survey (PACIC). Members of Breast Cancer Network Australia (BCNA) were invited via email to complete the survey either online or through direct mail.ResultsThe survey was sent to 2198 BCNA members and 177 responses were received (8.1%). Respondents were women aged 32–88 years (median 60.1 years). The majority were married (116; 67.7%) and had private insurance (137; 80.0%) and reported good to excellent health (119; 73.5%). Other health conditions were reported by 157 (88.7%), the most common being chronic pain (27.1%) and fatigue (22.0%). When asked about management of comorbidities or cancer, less than 20% were routinely asked about management goals, helped to set goals or asked about health habits.ConclusionsIn this population of survivors with good health status and high rates of private insurance, comorbidities were common and their management, as well as management of breast cancer, was poorly aligned with chronic condition management principles.

Finding My Way-Advanced: can a web-based psychosocial intervention improve the mental quality of life for women with metastatic breast cancer vs attention-control? Study protocol of a randomised controlled trial

BackgroundWomen living with metastatic breast cancer (MBC) are at risk of significantly impaired quality of life (QOL), symptom burden, distress and fear of progression, and unmet needs, yet they face barriers to accessing evidence-based psychosocial treatments. Our group therefore developed Finding My Way-Advanced (FMW-A), a web-based self-guided psychosocial program for women with MBC. This study aims to assess its efficacy in improving mental and other QOL domains, distress, fear of progression, unmet needs, and health service utilisation.MethodsThe multi-site randomised controlled trial (RCT) will enrol 370 Australian participants. Eligible participants are adult (18 years +) women diagnosed with MBC, with a life expectancy of 6 months or more, with sufficient English-language literacy to provide informed consent. Participants will be identified, screened and referred from one of 10 Australian sites, or via self-referral in response to advertisements. Participants complete four online questionnaires: prior to accessing their program (‘baseline’), 6 weeks later (‘post-intervention’), then 3 months and 6 months post-intervention. Consenting participants will be randomised to either FMW-A (intervention), or Breast Cancer Network Australia’s (BCNA) online/app resource My Journey (minimal intervention attention-control). This is a single-blind study, with randomisation computer-generated and stratified by site. FMW-A is a 6-module program addressing some of the most common issues experienced by women with MBC, with BCNA control resources integrated within the ‘resources’ section. All modules are immediately accessible, with an additional booster module released 10 weeks later. The primary outcome is mental QOL; statistical criteria for superiority is defined as a 4-point difference between groups at post-treatment. Secondary outcomes include other QOL domains, distress, fear of progression, health service use, intervention adherence, and user satisfaction.DiscussionThis will be the first adequately powered RCT of a self-directed online intervention for women with MBC. If efficacious, FMW-A will help address two national key priorities for management of MBC – enhancing QOL and reducing symptom burden. FMW-A has the potential to address unmet needs and overcome access barriers for this overlooked population, while reducing health system burden.Trial registrationThe study was registered prospectively with the ANZCTR on 29/10/2021. Trial ID ACTRN12621001482853p. https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382714&isReview=true

Barriers and enablers of weight management after breast cancer: a thematic analysis of free text survey responses using the COM-B model

BackgroundWeight gain is common after breast cancer. The aim of this study was to identify and describe the barriers to and enablers of successful weight management for women with breast cancer.MethodsThis was a combined inductive and deductive framework analysis of free text responses to an anonymous cross-sectional survey on weight after breast cancer. Women were recruited mainly through the Breast Cancer Network Australia Review and Survey Group. We applied deductive thematic analysis to free text responses to questions on barriers, enablers, research priorities, and one open-ended question at the end of the survey using the Capability, Opportunity, Motivation and Behaviour (COM-B) model as a framework. Subthemes that arose from the inductive analysis were mapped onto the COM-B model framework. Findings were used to identify behaviour change intervention functions.ResultsOne hundred thirty-three women provided free text responses. Most women were of Caucasian origin and had been diagnosed with non-metastatic breast cancer, with a mean age of 59.1 years. Women's physical capability to adopt and sustain healthy lifestyle habits was significantly affected by treatment effects and physical illness, and some lacked psychological capability to self-regulate the face of stress and other triggers. Limited time and finances, and the social impact of undergoing cancer treatment affected the ability to control their diet. Frustration and futility around weight management were prominent. However, some women were confident in their abilities to self-regulate and self-monitor lifestyle behaviours, described support from friends and health professionals as enablers, and welcomed the physical and psychological benefits of being active in the context of embracing transformation and self-care after cancer.ConclusionWomen need specific advice and support from peers, friends and families and health professionals. There is a substantial gap in provision of supportive care to enable women to adopt and sustain healthy lifestyles. Environmental restructuring (including financial support), incentivization (creating an expectation of looking and feeling better), persuasion and coercion (aiming to prevent recurrence), and equipping women with specific knowledge and skills, would also facilitate optimal lifestyle behaviours and weight management.

Who is managing menopausal symptoms, sexual problems, mood and sleep disturbance after breast cancer and is it working? Findings from a large community-based survey of breast cancer survivors.

To determine the nature and severity of vasomotor symptoms, sexual problems, mood and sleep disturbance in community-dwelling breast cancer patients, whether and where they received treatment for these symptoms and their satisfaction with treatment received. Online cross-sectional survey distributed through Breast Cancer Network Australia (BCNA). 524/2286 women responded to the invitation to participate. Of these, 74% (385/523) reported symptoms of interest and were included in the analysis. Mean age was 55.2years and mean time since breast cancer diagnosis was 5.7years. Most (66%) had received chemotherapy and were taking endocrine therapy (64%). The most common symptoms were hot flushes/night sweats and sleep disturbance (both 89%), vaginal dryness (75%), mood swings (62%) and sexual problems (60%). Symptoms were mild (21-33%) or moderate (21-38%) in around one third and severe in up to one quarter (8-26%). Symptoms affected the ability to "get on with their life" for 36%, predicted by severity of hot flushes (OR 1.4), sleep disturbance (OR 1.3), mood disturbance (OR 1.3), and sexual problems (OR 1.3). Only 32% were offered treatment, mostly delivered by GPs (33%) or oncologists (26%). Only 49% found this "somewhat effective" and 34% found it ineffective. The majority (60%) wanted more support to manage their symptoms. Menopausal symptoms, sexual problems, mood and sleep difficulties are common after breast cancer and often not effectively managed. There is an unmet need for coordinated care providing effective treatments.

Weight before and after a diagnosis of breast cancer or ductal carcinoma in situ: a national Australian survey

BackgroundOverweight/obesity are strongly implicated in breast cancer development, and weight gain post-diagnosis is associated with greater morbidity and all-cause mortality. The aim of this study was to describe the prevalence of overweight/obesity and the pattern of weight gain after diagnosis of breast cancer amongst Australian women.MethodsWe collected sociodemographic, medical, weight and lifestyle data using an anonymous, self-administered online cross-sectional survey between November 2017 and January 2018 from women with breast cancer living in Australia. The sample consisted mainly of members of the Breast Cancer Network Australia Review and Survey Group.ResultsFrom 309 responses we obtained complete pre/post diagnosis weight data in 277 women, and calculated pre/post Body Mass Index (BMI) for 270 women. The proportion of women with overweight/obesity rose from 48.5% at diagnosis to 67.4% at time of survey. Most women were Caucasian with stage I-III breast cancer (n = 254) or ductal carcinoma in situ (DCIS) (n = 33) and mean age was 59.1 years. The majority of women (63.7%) reported they had gained weight after diagnosis with an average increase of 9.07 kg in this group. Of the women who provided complete weight data, half gained 5 kg or more, 17.0% gained > 20 kg, and 60.7% experienced an increase in BMI of >1 kg/m2. Over half of the women rated their concern about weight as high. Of those women who gained weight, more than half reported that this occurred during the first year after diagnosis. Two-thirds (69.1%) of women aged 35–74 years gained, on average, 0.48 kg more weight per year than age-matched controls.ConclusionsAlthough the findings from this survey should be interpreted cautiously due to a limited response rate and self-report nature, they suggest that women in Australia gain a considerable amount of weight after a diagnosis of breast cancer/DCIS (in excess of age-matched data for weight gain) and report high levels of concern about their weight. Because weight gain after breast cancer may lead to poorer outcomes, efforts to prevent and manage weight gain must be prioritized and accelerated particularly in the first year after diagnosis.

Prevalence of and attitudes towards complementary therapy use for weight after breast cancer in Australia: a national survey

BackgroundWeight gain is common after breast cancer (BC) treatment and may increase the risk of disease recurrence. Complementary medicine (CM) use is high amongst BC patients. This paper describes the use of CM from a cross-sectional self-administered survey on prevalence and management of weight after BC.MethodsUse of CM was assessed using a question modified from the I-CAM Questionnaire. Participants were asked to rate perceived effectiveness, advantages and disadvantages, and which CM they were willing to use for weight management if there was evidence for effectiveness. The survey was emailed to members of the Breast Cancer Network Australia Survey and Review Group, the largest consumer advocacy group in Australia for people with breast cancer.ResultsThere were a total of 309 responses. Three quarters had used CM in the past 12 months. One third had tried CM for weight loss. Yoga, meditation and pilates were perceived to be effective for weight loss. Perceived advantages of CMs for weight loss were the ability to improve general wellbeing, relaxation, and being non-pharmacological while disadvantages were financial cost, finding a reliable practitioner, and lack of research for effectiveness. Three quarters would be willing to try CM for weight loss if there was evidence for effectiveness, with the most popular CMs being acupuncture, relaxation, yoga, supplements, and meditation.ConclusionsThe high use of CM in this group is consistent with previous research. Our research suggests that BC survivors would use acupuncture, meditation, supplements and yoga for weight loss if supported by scientifically-credible evidence. Research into the effectiveness of these treatments on weight loss after BC is warranted.

Self-compassion and hope in the context of body image disturbance and distress in breast cancer survivors.

Greater hope and self-compassion have individually been associated with lower psychological distress in women with breast cancer. Self-compassion is also associated with lower body image distress in this population, yet it is unknown whether hope also has this association. This study aimed to investigate the extent to which hope accounts for body image distress and psychological distress in breast cancer survivors alone, and in direct comparison to self-compassion. A total of 195 women were recruited from the Breast Cancer Network Australia and completed a cross-sectional online anonymous questionnaire containing self-report measures of body image (Body Image Scale), self-compassion (Self Compassion Scale-SF), hope (State Hope Scale), psychological distress (depression, anxiety, stress; DASS), and demographic/medical questions. Self-compassion and hope were inversely correlated with all outcomes. Hierarchical linear regression analyses indicated that self-compassion and hope uniquely explained variance in all outcomes with different magnitudes of strength. Comparison of standardised betas indicated (a) Body image distress-self-compassion (Bstd = -.355) vs hope (Bstd = -.161); (b) Stress-self-compassion (Bstd = -.562) vs hope (Bstd = -.287); (c) Depression-hope (Bstd = -.447) vs self-compassion (Bstd = -.374); (d) Anxiety-hope (Bstd = -.406) vs self-compassion (Bstd = -.249). The unique contribution of self-compassion and hope in explaining body image distress and psychological distress suggests that combined, hope-focused components of therapy may be suitable additions to the growing array of self-compassion-based psychosocial interventions to address body image and psychological distress concerns of women with breast cancer.

What factors influence the treatment decisions of women with breast cancer? Does residential location play a role?

Inequalities in cancer outcomes continue to exist throughout the world. In Australia, rural women diagnosed with breast cancer have significantly poorer 5-year survival, with variations in clinical management additionally observed. While factors impacting clinical management have been identified, there is little understanding about the factors that influence treatment decisions of women diagnosed with breast cancer. A mixed-methods study was conducted with women diagnosed with either pre-invasive or invasive breast cancer in Australia. The study included qualitative interviews and an online survey utilising Breast Cancer Network Australia's membership. Semi-structured interviews were conducted with rural women focusing on topics such as decision-making and factors influencing this. The online survey amongst metropolitan and rural (including regional, remote, very remote) women examined involvement in, and preference for, decision-making, and to what degree certain factors influenced treatment decisions. Sociodemographics included age, residential location, education and household income. Qualitative interviews were analysed using NVivo, and descriptive analyses were used to examine differences in frequency distributions across survey questions by residential location and age group for the online survey. Multivariable logistic regression analysis was conducted to examine factors associated with treatment decision-making. Nine women participated in the qualitative interviews and 815 (365 metropolitan and 450 rural) completed the online survey. Interviews found most women concurred with the recommendations of their doctor(s) and did not see this experience as 'making a decision'. In the online survey, 83.2% of women indicated at least some involvement in the decision-making with this being similar between rural and metropolitan women. Compared to women educated at an under- or postgraduate level, those educated at high school or less were about 50% less likely to be involved in treatment decision(s) (OR=0.51, 95% confidence interval=0.30-0.86). In both interviews and the online survey, factors having the strongest influence on treatment decisions centred around survival and reducing risk of progression or recurrence. Significantly more rural compared to metropolitan women indicated their decision was strongly influenced by treatment service location (42.8% and 28.1%, respectively, p<0.001). Rural women more frequently cited financial costs of treatment influenced their decision compared to metropolitan women (30.4% and 21.3%, respectively, p=0.04). Significantly fewer rural, (16.2%) compared to metropolitan (23.6%) women, had breast reconstruction (p=0.009). The option of having reconstructive surgery was less frequently cited as influencing treatment decisions for rural compared to metropolitan women (27.7% v 44.1% respectively, p<0.001). The treatment decisions of the majority of women were strongly influenced by the need to do everything possible to get better; however, rural women additionally indicated their decisions were also influenced by factors such as access to treatment services and the financial costs of treatment. Addressing travel and costs issues for rural women with breast cancer should be prioritised. Additionally, the finding that women with lower levels of education were significantly less likely to be involved in the decision-making process highlights the need to develop new or tailor existing resources. Further work could also examine the reasons why rural women are less likely to consider breast reconstruction important in decision-making.

Attachment styles, self-compassion, and psychological adjustment in long-term breast cancer survivors.

The increasing numbers of breast cancer survivors highlight the importance of delineating factors that identify women who are at risk of poor psychological adjustment in the long term. In breast cancer survivors, higher attachment anxiety and attachment avoidance have been associated with poorer psychological adjustment. Moreover, there is evidence that self-compassion, a kind manner of treating oneself during difficulties, is associated with psychological adjustment in this population. This study aimed to extend the association between attachment styles and psychological adjustment to the context of long-term breast cancer survivors and to determine whether lower self-compassion underlies this association. Participants (N=82) were recruited through emailed invitations to members of the Review and Survey Group of Breast Cancer Network Australia. Following online consent, participants completed measures assessing attachment styles, self-compassion, psychological stress, and the perceived negative impact of cancer. Bootstrapping analyses using the PROCESS macro were used to test the significance of indirect effects. As hypothesised, correlational analyses revealed that higher attachment anxiety and attachment avoidance were significantly and positively associated with stress and perceived negative impact of cancer. Bootstrapping analyses revealed significant indirect effects of attachment anxiety and attachment avoidance (on both stress and perceived negative impact of cancer) through lower self-compassion. These findings suggest that self-compassion training may be useful for enhancing the psychological adjustment of long-term breast cancer survivors. Future longitudinal and experimental studies in more diverse samples are needed to confirm causal directionality of these relationships and to expand upon these findings.

Use of compression garments by women with lymphoedema secondary to breast cancer treatment.

This aim of this study was to determine the use of compression garments by women with lymphoedema secondary to breast cancer treatment and factors which underpin use. An online survey was distributed to the Survey and Review group of the Breast Cancer Network Australia. The survey included questions related to the participants' demographics, breast cancer and lymphoedema medical history, prescription and use of compression garments and their beliefs about compression and lymphoedema. Data were analysed using principal component analysis and multivariable logistic regression. Compression garments had been prescribed to 83% of 201 women with lymphoedema within the last 5years, although 37 women had discontinued their use. Even when accounting for severity of swelling, type of garment(s) and advice given for use varied across participants. Use of compression garments was driven by women's beliefs that they were vulnerable to progression of their disease and that compression would prevent its worsening. Common reasons given as to why women had discontinued their use included discomfort, and their lymphoedema was stable. Participant characteristics associated with discontinuance of compression garments included their belief that (i) the garments were not effective in managing their condition, (ii) experienced mild-moderate swelling and/or (iii) had experienced swelling for greater than 5years. The prescription of compression garments for lymphoedema is highly varied and may be due to lack of underpinning evidence to inform treatment.

PO42 - The Unmet Information, Supportand Financial Needs of Women with Metastatic Breast Cancer in Australia: Results of Two Breast Cancer Network Australia Studies

PO42 - The Unmet Information, Supportand Financial Needs of Women with Metastatic Breast Cancer in Australia: Results of Two Breast Cancer Network Australia Studies

Financial cost of lymphedema borne by women with breast cancer.

ObjectiveOur study examines the financial cost of lymphedema following a diagnosis of breast cancer and addresses a significant knowledge gap regarding the additional impact of lymphedema on breast cancer survivors.MethodsAn online national survey was conducted with 361 women who had either breast cancer without lymphedema (BC) (group 1, n = 209) or breast cancer with lymphedema (BC+LE) (group 2, n = 152). Participant recruitment was supported by the Breast Cancer Network Australia and the Australasian Lymphology Association.ResultsBoth breast cancer and lymphedema result in significant out‐of‐pocket financial costs borne by women. Of patients with BC+LE, 80% indicated that their breast cancer diagnosis had affected them financially compared with 67% in the BC group (P < .020). For patients with lymphedema, over half (56%) indicated that this specific additional diagnosis to their breast cancer affected them financially and that costs increased with lymphedema severity. The cost of compression garments formed a large proportion of these costs (40.1%). The average number of attendances to a therapist each year was 5.8 (range, 0‐45). Twenty‐five patients (16.4%) had an episode of cellulitis in the past year. The incidence of cellulitis was 7.7% in 91 patients with subclinical or mild lymphedema compared with 29.5% of 61 patients with more extensive lymphedema (P < .001). The average out‐of‐pocket financial cost of lymphedema care borne by women was A$977 per annum, ranging from A$207 for subclinical lymphedema to over A$1400 for moderate or severe lymphedema.ConclusionsThis study identifies an additional detrimental effect of lymphedema on women in terms of financial costs.

Worse and worse off: the impact of lymphedema on work and career after breast cancer

PurposeOur study examines the impact of breast cancer-related lymphedema on women’s work and career. Our research addresses a significant knowledge gap regarding the additional impact of lymphedema on breast cancer survivors.MethodsAn online national survey was conducted with 361 women who either had breast cancer without lymphedema (Group 1, n = 209) or breast cancer with lymphedema (Group 2, n = 152). Participant recruitment was supported by the Breast Cancer Network Australia and the Australasian Lymphology Association.ResultsBoth breast cancer and lymphedema had a significant negative influence on women’s work and career. Respondents reported changes in employment resulting from stress and/or physical impairment, which affected attendance and work performance. The perceived negative impact of breast cancer on respondents’ work and career was noticeably greater in Group 2 (63 %) than Group 1 (51 %) (p = 0.03). Of the participants who were in paid employment at some time (either at diagnosis of lymphedema or at the time of the survey (n = 103), 43 (42 %) indicated that lymphedema impacted their work performance. The impact of lymphedema on work was incremental with increased severity of lymphedema (range 22–75 %). The annual number of days off work for subclinical/mild lymphedema participants was 1.4 versus 8.1 days for moderate or severe participants (p = 0.003).ConclusionsThis study identifies an additional detrimental effect of lymphedema on women’s work and career over and above the initial impact of breast cancer and provides empirical evidence for future prospective studies and policy improvement.

Aromatase inhibitor induced musculoskeletal syndrome: a significant problem with limited treatment options.

Aromatase inhibitor induced musculoskeletal syndrome is experienced by approximately half of women taking aromatase inhibitors, impairing quality of life and leading some to discontinue treatment. Evidence for effective treatments is lacking. We aimed to understand the manifestations and impact of this syndrome in the Australian breast cancer community, and strategies used for its management. A survey invitation was sent to 2390 members of the Breast Cancer Network Australia Review and Survey Group in April 2014. The online questionnaire included 45 questions covering demographics, aromatase inhibitor use, clinical manifestations and risk factors for the aromatase inhibitor musculoskeletal syndrome, reasons for treatment discontinuation and efficacy of interventions used. Aromatase inhibitor induced musculoskeletal syndrome was reported by 302 (82 %) of 370 respondents. Twenty-seven percent had discontinued treatment for any reason and of these, 68 % discontinued because of the musculoskeletal syndrome. Eighty-one percent had used at least one intervention from the following three categories to manage the syndrome: doctor prescribed medications, over-the-counter/complementary medicines or alternative/non-drug therapies. Anti-inflammatories, paracetamol (acetaminophen) and yoga were most successful in relieving symptoms in each of the respective categories. Almost a third of respondents reported that one or more interventions helped prevent aromatase inhibitor discontinuation. However, approximately 20 % of respondents found no intervention effective in any category. We conclude that aromatase inhibitor induced musculoskeletal syndrome is a significant issue for Australian women and is an important reason for treatment discontinuation. Women use a variety of interventions to manage this syndrome; however, their efficacy appears limited.

Development and piloting of a decision aid for women considering participation in the Sentinel Node Biopsy versus Axillary Clearance 2 breast cancer trial.

This study aimed to (1) develop a decision aid for women considering participation in the Sentinel Node Biopsy versus Axillary Clearance 2 (SNAC-2) breast cancer surgical trial and (2) obtain evidence on its acceptability, feasibility, and potential efficacy in routine trial clinical practice via a two-stage pilot. The decision aid was developed according to International Patient Decision Aid Standards. Study 1: an initial pilot involved 25 members of the consumer advocacy group, Breast Cancer Network Australia. Study 2: the main pilot involved 20 women eligible to participate in the SNAC-2 trial in New Zealand. In both pilots, a questionnaire assessed: information and involvement preferences, decisional conflict, SNAC-2 trial-related understanding and attitudes, psychological distress, and general decision aid feedback. A follow-up telephone interview elicited more detailed feedback on the decision aid design and content. In both pilots, participants indicated good subjective and objective understanding of SNAC-2 trial and reported low decisional conflict and anxiety. The decision aid was found helpful when deciding about trial participation and provided additional, useful information to the standard trial information sheet. The development and two-stage piloting process for this decision aid resulted in a resource that women found very acceptable and helpful in assisting decision-making about SNAC-2 trial participation. The process and findings provide a guide for developing other trial decision aids.

Abstract P1-12-05: Aromatase inhibitor induced musculoskeletal syndrome (AIMSS) in Australian women with early breast cancer: An Australia and New Zealand Breast Cancer Trials Group (ANZBCTG) survey of members of the Breast Cancer Network Australia (BCNA)

Abstract Background: AIMSS is experienced by approximately half of women taking an aromatase inhibitor (AI), impairing quality of life and in some leading to AI discontinuation. There is a lack of evidence for effective AIMSS treatments. Aim: To investigate the importance of AIMSS in Australian women with early breast cancer. Method: A survey invitation was distributed to 2390 members of the BCNA Review and Survey Group in April 2014. The online questionnaire consisted of 45 questions covering demographics, AI use, clinical manifestations and risk factors for AIMSS, reasons for AI discontinuation and efficacy of interventions used for AIMSS. AIMSS was defined as joint pain or stiffness that developed or worsened after commencing an AI. Results: Of 594 respondents, 370 (62%) were eligible. Reasons for exclusion were: preinvasive disease, locally advanced/metastatic breast cancer, or other reason. Eligible respondents had a median age range of 50-59 years. Duration of AI use varied (26%1year, 64% 1-5years, 10% 5years). 57% had received adjuvant chemotherapy. 43% of these commenced AI within 3 months of chemotherapy and 30% within 3-6 months of chemotherapy. A vitamin D test was performed in 64% of women and 68% were currently using vitamin D supplements. Joint pain during menopause was reported by 22% of respondents. AIMSS occurred in 302/370 women (81%). Of those who developed AIMSS, sites affected were feet (68%), hands or wrists (65%), knees (62%), hips (56%), shoulders or elbows (49%), back (46%), or neck (3%). 34% of women had considered stopping an AI because of AIMSS. 99 (27%) of respondents had discontinued AI for any reason and of these 68% discontinued because of AIMSS. Non-AIMSS symptoms identified as reasons for discontinuation included fatigue, vaginal/urinary symptoms and hot flushes. In respondents who discontinued AI, 20% ceased use in the first 3 months, 30% during months 3-12 and 38%12 months. 42% of respondents who discontinued an AI restarted the same or a different AI after a treatment break. To manage AIMSS 23% of respondents used doctor prescribed medications (eg anti-inflammatories, codeine, morphine,), 55% over the counter (OTC) or complementary medicines (eg low dose anti-inflammatories, paracetamol, chondroitin, fish or krill oil, glucosamine, and vitamin D) and 29% alternative therapies (eg acupuncture, massage, Tai Chi and yoga). Respondents identified the following in each of the above categories as most successful in relieving AIMSS symptoms: doctor prescribed anti-inflammatories, paracetamol and yoga. Doctor prescribed medications and OTC/complementary medicine either completely or significantly relieved AIMSS in 12% and 25% of cases respectively. 27% of respondents found that one or more of the interventions that they had used to manage AIMSS helped prevent AI discontinuation. Conclusion: AIMSS is a significant issue for Australian women and is an important reason for AI discontinuation. Women use a number of interventions to manage AIMSS, however their efficacy appears limited. Effective AIMSS interventions are needed, to improve quality of life and reduce AI discontinuation. Citation Format: Janine M Lombard, Nicholas Zdenkowski, Kathy Wells, Nicca Grant, Linda Reaby, John F Forbes, Jacquie Chirgwin. Aromatase inhibitor induced musculoskeletal syndrome (AIMSS) in Australian women with early breast cancer: An Australia and New Zealand Breast Cancer Trials Group (ANZBCTG) survey of members of the Breast Cancer Network Australia (BCNA) [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P1-12-05.

Understanding the factors that influence breast reconstruction decision making in Australian women

BackgroundBreast reconstruction is safe and improves quality of life. Despite this, many women do not undergo breast reconstruction and the reasons for this are poorly understood. This study aims to identify the factors that influence a woman's decision whether or not to have breast reconstruction and to better understand their attitudes toward reconstruction. MethodologyAn online survey was distributed to breast cancer patients from Breast Cancer Network Australia. Results were tabulated, described qualitatively and analyzed for significance using a multiple logistic regression model. Results501 mastectomy patients completed surveys, of which 62% had undergone breast reconstruction. Factors that positively influenced likelihood of reconstruction included lower age, bilateral mastectomy, access to private hospitals, decreased home/work responsibilities, increased level of home support and early discussion of reconstructive options. Most common reasons for avoiding reconstruction included “I don't feel the need” and “I don't want more surgery”. The most commonly sited sources of reconstruction information came from the breast surgeon followed by the plastic surgeon then the breast cancer nurse and the most influential of these was the plastic surgeon. ConclusionsA model using factors easily obtained on clinical history can be used to understand likelihood of reconstruction. This knowledge may help identify barriers to reconstruction, ultimately improving the clinicians' ability to appropriately educate mastectomy patients and ensure effective decision making around breast reconstruction.

How Social Cognitive Theory can help oncology-based health professionals promote physical activity among breast cancer survivors

PurposeThe majority of post treatment breast cancer survivors do not engage in physical activity (PA) at the recommended level. The promotion of PA among this group has the potential to dramatically improve quality of life and health outcomes. To maximise effectiveness, programs should be theory-based and address key determinants of PA behaviour. Social Cognitive Theory (SCT) has shown particular promise for developing and guiding PA interventions, but future research regarding how each SCT construct relates to PA among this group is needed. This study aims to explore how core SCT constructs impact on PA participation among post treatment breast cancer survivors, and gain greater insights into how to shape PA program strategies that will be appealing and effective for this group. MethodsPost treatment breast cancer survivors were recruited from the Breast Cancer Network Australia's review and survey group. Semi-structured telephone interviews examined PA patterns and SCT constructs and data were analysed thematically. ResultsEight post treatment breast cancer survivors participated in the study. Changes in activity level since diagnosis were common; in most cases this reflected a decline in PA. Key social cognitive and environmental influences on PA were described under the following themes: knowledge, outcome expectations, self-efficacy and personal, behavioural and environment facilitators and inhibitors. ConclusionThe results of this study demonstrate the utility of SCT for guiding PA programs. Insight into how social cognitive factors may influence PA behaviour in this group is offered and direction for how oncology-based health professionals can promote PA among breast cancer survivors is provided.

Using scenarios to explain life expectancy in advanced cancer: attitudes of people with a cancer experience

We sought the attitudes of people with a cancer experience to using best case, worst case, and typical scenarios for survival to explain life expectancy. Oncology clinic attendees and Breast Cancer Network Australia (BCNA) members completed a survey describing two formats for explaining life expectancy to a hypothetical patient with advanced cancer-providing either three scenarios for survival or just the median survival time. Characteristics of the 505 respondents from outpatient clinics (n = 251) and BCNA (n = 254) were median age of 58 years, female 74 %, and breast primary 64 %. More respondents agreed that explaining three scenarios (vs. median survival) would make sense (93 vs. 75 %), be helpful (93 vs. 69 %), convey hope (68 vs. 44 %), and reassure (60 vs. 40 %), while fewer respondents agreed that explaining three scenarios (vs. median survival) would upset people (24 vs. 36 %); all p values < 0.001. Most respondents agreed that each scenario should be presented: best case 89 %, worst case 82 %, and typical 92 %. For information about their own prognosis, 88 % preferred all three scenarios and 5 % a single estimate of the median. Respondents with higher education were more likely to agree that presenting three scenarios would be helpful (95 vs. 90 %, p = 0.05). Respondents with breast cancer were more likely to agree that explaining three scenarios would upset people (31 vs. 13 %, p < 0.001). Most respondents judged presentation of best case, worst case, and typical scenarios preferable and more helpful and reassuring than presentation of just the median survival time when explaining life expectancy to patients with advanced cancer.