Specialist breast cancer nurses' views on implementing a fear of cancer recurrence intervention in practice: a mixed methods study.

INTRODUCTION: Fear of cancer recurrence (FCR) in people with breast cancer affects treatment recovery, quality of life, service utilisation and relationships. Our aim was to investigate how specialist breast cancer nurses (SBCN) respond to their patients' fears of cancer recurrence and analyse SBCN's views about embedding a new psychological intervention, the Mini-AFTERc, into their consultations. METHOD: A mixed methods sequential design was used, informed by normalisation process theory. Phase 1: UK SBCNs were emailed a web-based survey to investigate how breast cancer survivors' FCR is currently identified and managed, and their willingness to utilise the Mini-AFTERc. Phase 2: a purposive sample of respondents (n = 20) were interviewed to augment phase 1 responses, and explore views on the importance of addressing FCR, interest in the Mini-AFTERc intervention, its content, skills required and challenges to delivering the intervention. RESULTS: Ninety nurses responded to the survey. When SBCN's were asked to identify the proportion of patients experiencing FCR in their caseload, there was no consensus on the size of the problem or unmet need. They estimated that 20-100% people experience moderate FCR and 10-70% severe FCR. The interviews identified that clinical conversations are focused primarily on giving information about signs and symptoms of recurrence rather than addressing the psychological aspects of fear. CONCLUSION: Findings indicate wide variability in how FCR was identified, assessed and supported by a sample of UK SBCNs. The introduction of a structured intervention into practice was viewed favourably and has implications for nursing and health professional ways of working in all cancer services.

The iPrevent Online Breast Cancer Risk Assessment and Risk Management Tool: Usability and Acceptability Testing.

BACKGROUND: iPrevent estimates breast cancer (BC) risk and provides tailored risk management information. OBJECTIVE: The objective of this study was to assess the usability and acceptability of the iPrevent prototype. METHODS: Clinicians were eligible for participation in the study if they worked in primary care, breast surgery, or genetics clinics. Female patients aged 18-70 years with no personal cancer history were eligible. Clinicians were first familiarized with iPrevent using hypothetical paper-based cases and then actor scenarios; subsequently, they used iPrevent with their patients. Clinicians and patients completed the System Usability Scale (SUS) and an Acceptability questionnaire 2 weeks after using iPrevent; patients also completed measures of BC worry, anxiety, risk perception, and knowledge pre- and 2 weeks post-iPrevent. Data were summarized using descriptive statistics. RESULTS: The SUS and Acceptability questionnaires were completed by 19 of 20 clinicians and 37 of 43 patients. Usability was above average (SUS score >68) for 68% (13/19) clinicians and 76% (28/37) patients. The amount of information provided by iPrevent was reported as "about right" by 89% (17/19) clinicians and 89% (33/37) patients and 95% (18/19) and 97% (36/37), respectively, would recommend iPrevent to others, although 53% (10/19) clinicians and 27% (10/37) patients found it too long. Exploratory analyses suggested that iPrevent could improve risk perception, decrease frequency of BC worry, and enhance BC prevention knowledge without changing state anxiety. CONCLUSIONS: The iPrevent prototype demonstrated good usability and acceptability. Because concerns about length could be an implementation barrier, data entry has been abbreviated in the publicly available version of iPrevent.

A feasibility study of the Mini-AFTER telephone intervention for the management of fear of recurrence in breast cancer survivors: a mixed-methods study protocol.

BACKGROUND: Fear of recurrence (FoR) is a major concern for patients following treatment for primary breast cancer, affecting 60-99% of breast cancer survivors. Mini-AFTER is a brief intervention developed to address this fear, that breast care nurses are ideally placed to deliver. However, their interest in delivering such an intervention is unknown and crucial to its introduction. This study aims to assess the perceived feasibility of the Mini-AFTER telephone intervention for implementation by breast care nurses to manage moderate levels of fear of recurrence among breast cancer survivors. METHODS: A sequential explanatory mixed-methods design will be used, informed by normalisation process theory (NPT). The design will be guided by the stages of NPT. Specifically, understanding and evaluating the process (implementation) that would enable an intervention, such as the Mini-AFTER, not only to be operationalised and normalised into everyday work (embedded) but also sustained in practice (integration). Phase 1: all members on the UK Breast Cancer Care Nursing Network database (n = 905) will be emailed a link to a web-based survey, designed to investigate how breast cancer survivors' FoR is identified and managed within current services and their willingness to deliver the Mini-AFTER. Phase 2: a purposive sample of respondents (n = 20) will be interviewed to build upon the responses in phase 1 and explore breast care nurses' individual views on the importance of addressing fear of recurrence in their clinical consultations, interest in the Mini-AFTER intervention, the content, skills required and challenges to deliver the intervention. DISCUSSION: This study will provide information about the willingness of breast care nurses (BCNs) to provide a structured intervention to manage fear of recurrence. It will identify barriers and facilitators for effective delivery and inform the future design of a larger trial of the Mini-AFTER intervention.

How does genetic risk information for Lynch syndrome translate to risk management behaviours?

BACKGROUND: There is limited research on why some individuals who have undergone predictive genetic testing for Lynch syndrome do not adhere to screening recommendations. This study aimed to explore qualitatively how Lynch syndrome non-carriers and carriers translate genetic risk information and advice to decisions about risk managment behaviours in the Australian healthcare system. METHODS: Participants of the Australasian Colorectal Cancer Family Registry who had undergone predictive genetic testing for Lynch syndrome were interviewed on their risk management behaviours. Transcripts were analysed thematically using a comparative coding analysis. RESULTS: Thirty-three people were interviewed. Of the non-carriers (n = 16), 2 reported having apparently unnecessary colonoscopies, and 6 were unsure about what population-based colorectal cancer screening entails. Of the carriers (n = 17), 2 reported they had not had regular colonoscopies, and spoke about their discomfort with the screening process and a lack of faith in the procedure's ability to reduce their risk of developing colorectal cancer. Of the female carriers (n = 9), 2 could not recall being informed about the associated risk of gynaecological cancers. CONCLUSION: Non-carriers and female carriers of Lynch syndrome could benefit from further clarity and advice about appropriate risk management options. For those carriers who did not adhere to colonoscopy screening, a lack of faith in both genetic test results and screening were evident. It is essential that consistent advice is offered to both carriers and non-carriers of Lynch syndrome.

The Experience of Extended Bowel Resection in Individuals With a High Metachronous Colorectal Cancer Risk: A Qualitative Study.

PURPOSE/OBJECTIVES: To ascertain individual experiences of extended bowel resection as treatment for colorectal cancer (CRC) in those with a high metachronous CRC risk, including the self-reported adequacy of information received at different time points of treatment and recovery.
. RESEARCH APPROACH: Qualitative.
. SETTING: Participants were recruited through the Australasian Colorectal Cancer Family Registry and two hospitals in Melbourne, Australia.
. PARTICIPANTS: 18 individuals with a high metachronous CRC risk who had an extended bowel resection from 6-12 months ago.
. METHODOLOGIC APPROACH: Semistructured interviews. Data were analyzed thematically.
. FINDINGS: In most cases, the treating surgeon decided on the best option regarding surgical treatment. Participants felt well informed about the surgical procedure. Information related to surgical outcomes, recovery, and lifestyle adjustment from surgery was not always adequate. Many participants described ongoing worry about developing another cancer. 
. CONCLUSIONS: Patients undergoing an extended resection to reduce metachronous CRC risk require detailed information delivered at more than one time point and relating to several different aspects of the surgical procedure and its outcomes.
. INTERPRETATION: An increased emphasis should be given to the provision of patient information on surgical outcomes, recovery, and lifestyle adjustment. Colorectal nurses could provide support for some of the reported unmet needs.

iPrevent®: a tailored, web-based, decision support tool for breast cancer risk assessment and management.

We aimed to develop a user-centered, web-based, decision support tool for breast cancer risk assessment and personalized risk management. Using a novel model choice algorithm, iPrevent(®) selects one of two validated breast cancer risk estimation models (IBIS or BOADICEA), based on risk factor data entered by the user. Resulting risk estimates are presented in simple language and graphic formats for easy comprehension. iPrevent(®) then presents risk-adapted, evidence-based, guideline-endorsed management options. Development was an iterative process with regular feedback from multidisciplinary experts and consumers. To verify iPrevent(®), risk factor data for 127 cases derived from the Australian Breast Cancer Family Study were entered into iPrevent(®), IBIS (v7.02), and BOADICEA (v3.0). Consistency of the model chosen by iPrevent(®) (i.e., IBIS or BOADICEA) with the programmed iPrevent(®) model choice algorithm was assessed. Estimated breast cancer risks from iPrevent(®) were compared with those attained directly from the chosen risk assessment model (IBIS or BOADICEA). Risk management interventions displayed by iPrevent(®) were assessed for appropriateness. Risk estimation model choice was 100 % consistent with the programmed iPrevent(®) logic. Discrepant 10-year and residual lifetime risk estimates of >1 % were found for 1 and 4 cases, respectively, none was clinically significant (maximal variation 1.4 %). Risk management interventions suggested by iPrevent(®) were 100 % appropriate. iPrevent(®) successfully integrates the IBIS and BOADICEA risk assessment models into a decision support tool that provides evidence-based, risk-adapted risk management advice. This may help to facilitate precision breast cancer prevention discussions between women and their healthcare providers.

Transitioning to routine breast cancer risk assessment and management in primary care: what can we learn from cardiovascular disease?

To capitalise on advances in breast cancer prevention, all women would need to have their breast cancer risk formally assessed. With ~85% of Australians attending primary care clinics at least once a year, primary care is an opportune location for formal breast cancer risk assessment and management. This study assessed the current practice and needs of primary care clinicians regarding assessment and management of breast cancer risk. Two facilitated focus group discussions were held with 17 primary care clinicians (12 GPs and 5 practice nurses (PNs)) as part of a larger needs assessment. Primary care clinicians viewed assessment and management of cardiovascular risk as an intrinsic, expected part of their role, often triggered by practice software prompts and facilitated by use of an online tool. Conversely, assessment of breast cancer risk was not routine and was generally patient- (not clinician-) initiated, and risk management (apart from routine screening) was considered outside the primary care domain. Clinicians suggested that routine assessment and management of breast cancer risk might be achieved if it were widely endorsed as within the remit of primary care and supported by an online risk-assessment and decision aid tool that was integrated into primary care software. This study identified several key issues that would need to be addressed to facilitate the transition to routine assessment and management of breast cancer risk in primary care, based largely on the model used for cardiovascular disease.

Assessing and managing breast cancer risk: clinicians' current practice and future needs.

Decision support tools for the assessment and management of breast cancer risk may improve uptake of prevention strategies. End-user input in the design of such tools is critical to increase clinical use. Before developing such a computerized tool, we examined clinicians' practice and future needs. Twelve breast surgeons, 12 primary care physicians and 5 practice nurses participated in 4 focus groups. These were recorded, coded, and analyzed to identify key themes. Participants identified difficulties assessing risk, including a lack of available tools to standardize practice. Most expressed confidence identifying women at potentially high risk, but not moderate risk. Participants felt a tool could especially reassure young women at average risk. Desirable features included: evidence-based, accessible (e.g. web-based), and displaying absolute (not relative) risks in multiple formats. The potential to create anxiety was a concern. Development of future tools should address these issues to optimize translation of knowledge into clinical practice.