Cost-effectiveness of the BRECONDA decision aid for women with breast cancer: Results from a randomized controlled trial.

OBJECTIVE: To report on the cost-effectiveness of BRECONDA (Breast RECONstruction Decision Aid), a web-based decision aid to facilitate decisions regarding breast reconstruction surgery, with usual care for women with breast cancer. METHODS: The economic evaluation was conducted alongside a randomized controlled trial. Women diagnosed with breast cancer or ductal carcinoma in situ and eligible for breast reconstruction following mastectomy were randomized to access BRECONDA for 6 months + usual care (n = 106) or usual care (n = 116) and were assessed at baseline preintervention, and then 1-month and 6-months post-randomization. Decisional conflict, satisfaction with information, decisional regret, and utilities were assessed by using maximum-likelihood linear mixed effects models. Costs included the fixed costs of BRECONDA, health care provider time, and health care resource use. Nonparametric bootstrapping was used to estimate incremental cost-effectiveness ratios. RESULTS: BRECONDA resulted in significantly less decisional conflict and greater satisfaction with information over time. Quality-adjusted life years did not differ between participants who received the decision aid compared with usual care. The cost of BRECONDA was estimated to be small (AUD$10) relative to other health care interventions and resulted in decreased health care costs overall (AUD$764). Based on the point estimates, the decision aid was more effective and less costly (dominant) for all measures of effectiveness. It was estimated that the decision aid has an 87% probability of being cost-effective at $60 000 per quality-adjusted life year gained. CONCLUSIONS: The BRECONDA web-based intervention designed to facilitate decisions regarding breast reconstruction surgery is likely to be cost-effective compared with usual care for women with breast cancer.

Facilitating decision-making in women undergoing genetic testing for hereditary breast cancer: BRECONDA randomized controlled trial results.

BACKGROUND: Decision-making concerning risk-reducing mastectomy for women at hereditary risk of breast cancer entails complex personal choices. Deciding whether and how to restore breast shape after risk-reducing mastectomy is a key part of this process. We developed a web-based decision aid, BRECONDA (Breast Reconstruction Decision Aid), to assist women in decision-making regarding breast reconstruction. METHOD: This study assessed the efficacy of BRECONDA to assist women at increased risk of breast cancer in making decisions regarding risk-reducing mastectomy in terms of decisional conflict, knowledge, and satisfaction with information. Women at hereditary risk of breast cancer (N = 64) were recruited into this randomized controlled trial from four Australian hereditary cancer clinics. Participants initially provided online consent and completed baseline questionnaires assessing decisional conflict, knowledge, and satisfaction with information. They were then randomly assigned to either: 1) Intervention - unlimited access to BRECONDA, with usual care; or, 2) Control - usual care. At 2-months follow-up (N = 60) the outcomes were re-assessed. Intervention participants also completed user acceptability ratings for the intervention overall and specific key modules. RESULTS: MANCOVA analyses indicated that Intervention participants reported lower decisional conflict (P = 0.027), and greater knowledge (P = 0.019) and satisfaction with information (P < 0.0005) at 2-months follow-up compared with Controls. Intervention participants reported high user acceptability and satisfaction with the intervention. CONCLUSION: BRECONDA benefits women considering risk-reducing mastectomy by reducing decisional conflict, and improving knowledge and satisfaction with information. These benefits, coupled with high user acceptability, demonstrate the feasibility of implementing BRECONDA in the hereditary cancer risk context.

Qualitatively understanding patients' and health professionals' experiences of the BRECONDA breast reconstruction decision aid.

OBJECTIVE: Women diagnosed with breast cancer or ductal carcinoma in situ and those with a genetic susceptibility to developing this disease face the challenging decision of whether or not to undergo breast reconstruction following mastectomy. As part of a large randomized controlled trial, this qualitative study examined women's experiences of using the Breast RECONstruction Decision Aid (BRECONDA) and health professionals' feedback regarding the impact of this resource on patients' knowledge and decision making about breast reconstruction. METHOD: Semistructured interviews were conducted with women who accessed the BRECONDA intervention (N = 36) and with their healthcare providers (N = 6). All interviews were transcribed verbatim and subjected to thematic analysis by 3 independent coders. RESULTS: Participants reported an overall positive impression, with all interviewees endorsing this decision aid as a useful resource for women considering reconstructive surgery. Thematic analysis of patient interviews revealed 4 themes: overall impressions and aesthetics; personal relevance and utility; introducing BRECONDA; and advantages and suggested improvements. Analysis of health professionals' interviews also revealed 4 themes: need for BRECONDA, impact of BRECONDA, potential difficulties that may arise in using the decision aid, and recommending BRECONDA to patients. Patients indicated that they derived benefit from this resource at all stages of their decision-making process, with the greatest perceived benefit being for those early in their breast reconstruction journey. CONCLUSION: These findings support the use of BRECONDA as an adjunct to clinical consultation and other information sources.

Reducing Decisional Conflict and Enhancing Satisfaction with Information among Women Considering Breast Reconstruction following Mastectomy: Results from the BRECONDA Randomized Controlled Trial.

BACKGROUND: Deciding whether or not to have breast reconstruction following breast cancer diagnosis is a complex decision process. This randomized controlled trial assessed the impact of an online decision aid [Breast RECONstruction Decision Aid (BRECONDA)] on breast reconstruction decision-making. METHODS: Women (n = 222) diagnosed with breast cancer or ductal carcinoma in situ, and eligible for reconstruction following mastectomy, completed an online baseline questionnaire. They were then assigned randomly to receive either standard online information about breast reconstruction (control) or standard information plus access to BRECONDA (intervention). Participants then completed questionnaires at 1 and 6 months after randomization. The primary outcome was participants' decisional conflict 1 month after exposure to the intervention. Secondary outcomes included decisional conflict at 6 months, satisfaction with information at 1 and 6 months, and 6-month decisional regret. RESULTS: Linear mixed-model analyses revealed that 1-month decisional conflict was significantly lower in the intervention group (27.18) compared with the control group (35.5). This difference was also sustained at the 6-month follow-up. Intervention participants reported greater satisfaction with information at 1- and 6-month follow-up, and there was a nonsignificant trend for lower decisional regret in the intervention group at 6-month follow-up. Intervention participants' ratings for BRECONDA demonstrated high user acceptability and overall satisfaction. CONCLUSIONS: Women who accessed BRECONDA benefited by experiencing significantly less decisional conflict and being more satisfied with information regarding the reconstruction decisional process than women receiving standard care alone. These findings support the efficacy of BRECONDA in helping women to arrive at their breast reconstruction decision.

Women's experiences of dating after breast cancer.

This study examined women's experiences of romantically dating after breast cancer. Semistructured interviews were conducted with 22 female breast cancer survivors who attempted to form new relationships post-breast cancer. Interview transcripts were analyzed using grounded theory methodology. We identified an overarching theme of "navigating the breast cancer dating journey," comprising seven themes including women's decision to consider dating; ability/desire to commence a new relationship; cancer-related disclosure; changes to intimacy and sexuality; body image difficulties; changing values; and trusting a new partner. Future research should empirically determine factors predicting a woman's ability to form a romantic relationship after breast cancer.

The Effect of Eating Disorder Memoirs in Individuals With Self-Identified Eating Pathologies.

As part of a larger, mixed-methods study, we posted an invitation to participate in a study on the effects of reading eating disorder memoirs on the website of an organization that provides support for people with eating disorders. Twenty-four women completed the questionnaire. Qualitative analysis of their responses indicated a recovery continuum, whereby the direction of memoir influence seemed to depend on an individual's recovery stage and motivation to recover. Individuals who reported that they were exposed to memoirs before, or during, their illness reported experiencing negative consequences including making unfavorable social comparisons, along with emulation and triggering of disordered behaviors, whereas those who reported being exposed when in recovery reported more positive outcomes including hope, validation, and social support. Findings have implications for the use of personal accounts as a means of facilitating patient recovery in eating disorder treatment settings. Future research should test the influence of memoirs using a larger eating disorder sample, and across different recovery stages.

Dating concerns among women with breast cancer or with genetic breast cancer susceptibility: a review and meta-synthesis.

OBJECTIVE: While dating is critical in the formation of a lifelong romantic relationship, women with breast cancer or a genetic susceptibility to developing this disease report a myriad of dating concerns. This review synthesises and discusses the perceived dating barriers and concerns in this population. METHOD: A systematic search of CINAHL, Embase, MEDLINE, PsycINFO and PubMed was undertaken and yielded 19 published qualitative studies. Papers were subjected to critical appraisal to ensure the integrity of findings. RESULTS: Six areas of concern were identified: Feeling unattractive due to treatment side effects; perceiving limited dating partners available; determining how, when and what to disclose; fear of cancer recurrence and reduced life expectancy; apprehension about entering into a new sexual relationship; and dating urgency and not wanting to 'waste time' on partners without long-term potential. CONCLUSIONS: This paper provides a valuable synthesis of the complex issues, concerns and decisions that single women face at different stages of relationship formation following their breast cancer experience. Future research is warranted to explore the perceptions, appraisals and beliefs underlying these concerns, to help guide the future design and development of appropriate informational and supportive care offered to breast cancer patients.

The effect of disease risk probability and disease type on interest in clinic-based versus direct-to-consumer genetic testing services.

The effect of disease-specific cognitions on interest in clinic-based and direct-to-consumer (DTC) genetic testing was assessed. Participants (N = 309) responded to an online hypothetical scenario and received genetic testing-related messages that varied by risk probability (25, 50, 75 %) and disease type (Alzheimer's disease vs. Type 2 Diabetes). Post-manipulation interest increased for both testing types, but was greater for clinic-based testing. Interest was greater for Type 2 Diabetes than for Alzheimer's disease, the latter perceived as more severe and likely, and less treatable and preventable. For DTC testing only, participants allocated to the high risk condition (75 %) had greater testing interest than those in the low (25 %) category. DTC testing is perceived as a viable, but less preferred, option compared with clinic-based testing. Particularly when considering DTC genetic testing, there is a need to emphasize subjective disease-related perceptions, including risk probability.

Fatalism and health promoting behaviors in Chinese and Korean immigrants and Caucasians.

Fatalism has been associated with non-adherence to health behavior in the past. This study compared fatalism of Chinese and Korean immigrants with native-born Caucasians (N = 309) and examined whether the relationship between fatalism and exercise, nutrition and medical screening would be moderated by ethnicity. Chinese reported higher fatalism than Caucasians and Koreans. Higher fatalism was associated with greater exercise among Chinese and Koreans, but less reported exercise among Caucasians. Caucasian participants had higher scores for nutrition and medical screening compared with Chinese and Korean immigrants. These findings indicate that fatalism is more prevalent among Chinese immigrants; however, there is no evidence of a detrimental effect of fatalism on exercise, nutrition or medical screening among the Asian immigrants. Caucasians with higher fatalism may be at greater risk of future illnesses, given the association between fatalism and sedentary behavior in this group. Differences between cultural groups in the adoption of health behavior justify the development and assessment of targeted interventions to optimize health promoting behaviors.

Psychosocial approaches to participation in BRCA1/2 genetic risk assessment among African American women: a systematic review.

Breast cancer is a significant health concern for African American women. Nonetheless, uptake of genetic risk assessment (including both genetic counseling and testing) for breast cancer gene mutations among these populations remains low. This paper systematically reviews cognitive (i.e., beliefs) and affective (i.e., emotions) factors influencing BRCA1/2 genetic risk assessment among African American women as well as psychosocial interventions to facilitate informed decision making in this population. A systematic search of CINAHL, PubMed, and PsycINFO was undertaken, yielding 112 published studies. Of these, 18 met the eligibility criteria. African American woman are likely to participate in genetic risk assessment if they are knowledgeable about cancer genetics, perceive a high risk of developing breast cancer, have low expectancies of stigmatization from medical professionals, view themselves as independent from family, and have fatalistic beliefs and a future temporal orientation. Anticipated negative affective responses, such as an inability to "handle" the results of testing, are barriers to uptake. Specific perceptions, beliefs, and emotional factors are associated with genetic risk assessment among African American women. Understanding these factors is key in the development of interventions to facilitate informed decision making in this population.