Information needs in breast reconstruction after mastectomy: a qualitative analysis of free-text responses from 2077 women.

BACKGROUND: For many, breast reconstruction following mastectomy (BR) forms an integral part of breast cancer survivorship. For those considering BR, provision of information is essential to allow informed decisions. Using free-text responses from a survey of breast cancer survivors, this study aims to understand current gaps in information regarding BR. METHOD: At the end of an online survey assessing BR experiences, participants were asked the open-ended question: "Thinking about women who may experience BR in the future, is there anything you think needs to change so that they have a better experience?". Responses were analysed to identify common themes. RESULTS: 3384 people completed the survey with 2,077 (61%) responding to the open-ended question. Three themes were identified: (1) content of information, (2) managing expectations, and (3) information sources, each associated with multiple subthemes. Information wanted in theme (1) covered a range of topics including BR options, risks, recovery and 'going flat.' Information on BR's psychological impact was also needed, with comments indicating many were not prepared for this. Theme (2) stressed the importance of realistic information about BR outcomes and processes to reduce discrepancies between expectations and experiences. In theme (3), peer insights and photos were important sources of realistic information. CONCLUSION: Multiple gaps exist in BR-related information available to women. BR information needs to be comprehensive, realistic, and provided at the right time to allow informed decision-making. Developing strategies to strengthen existing information provision as well as new resources to fill information gaps might enhance BR experiences.

Feasibility and preliminary efficacy of iConquerFear: a self-guided digital intervention for fear of cancer recurrence.

PURPOSE: Approximately 50% of cancer survivors experience moderate-severe fear of cancer recurrence (FCR). Self-guided digital interventions have potential to address the high level of FCR-related unmet needs at scale, but existing digital interventions have demonstrated variable engagement and efficacy. This study aimed to evaluate the feasibility and preliminary efficacy of iConquerFear, a five-module self-guided digital FCR intervention. METHODS: Eligible curatively treated breast cancer survivors were recruited. Participants reporting clinically significant FCR (≥ 13 on the Fear of Cancer Recurrence Inventory-Short Form; FCRI-SF) were given access to iConquerFear. Feasibility was indicated by > 50% of eligible participants enrolling in iConquerFear and recording moderate (≥ 120 min) or greater usage. Preliminary efficacy was evaluated via changes in self-reported FCR severity, anxiety, depression, intrusions and metacognitions from baseline to immediately and 3 months post-intervention. RESULTS: Fifty-four (83%) of 65 eligible participants enrolled in iConquerFear; six subsequently withdrew. Thirty-nine (83%) participants recorded moderate (n = 24; 120-599 min) or high (n = 15; ≥ 600 min) usage. Engagement levels increased with participant age (p = 0.043), but were lower in participants with higher baseline FCR (p = 0.028). Qualitative feedback indicated engagement was sometimes limited by difficulties with navigation and relating to featured survivors. Participants reported significantly improved FCR (mean reduction (95%CI): baseline to post-intervention - 3.44 (- 5.18, - 1.71), baseline to 3-month follow-up - 4.52 (- 6.25, - 2.78), p = < 0.001). CONCLUSION: iConquerFear is a feasible and potentially efficacious intervention for reducing FCR in breast cancer survivors. Easier navigation and more relatable examples may enhance engagement. IMPLICATIONS FOR CANCER SURVIVORS: iConquerFear may help address moderate but burdensome FCR levels in cancer survivors.

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

INTRODUCTION: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.