Cancer Care Coordinators: Realising the Potential for Improving the Patient Journey

A person diagnosed with cancer can receive multiple treatments in a variety of different health care settings over extended periods of time1. During this time, they come into contact with multiple health care providers. For example, one recent UK study reported that cancer patients with a diagnosis of less than one year had met 28 doctors on average since their diagnosis2. Add to this the many other health professionals with whom the patient will come into contact during their illness and the complex maze that can characterise the patient’s cancer journey is obvious. The Optimising Cancer Care in Australia report3 published in 2003 by the peak cancer organisations in Australia concluded that there are many places for the person with cancer to get lost in the system, causing unnecessary morbidity and undue distress. The lack of an integrated care system for people with cancer was identified as a major failing of today’s health system3. A number of states in Australia have moved to appoint cancer care coordinators as a strategy to address such problems. In Queensland, cancer coordination positions have been established in a number of Health Service Districts in the Southern and Central Zone of the State, initially to scope patterns of care, referral pathways and to define a cancer coordination model for their regions that is consistent across the state, but able to meet the local needs of the population. To support its Cancer Clinical Service Framework, the NSW Health Department plans to recruit up to 50 cancer nurse coordinators. Cancer nurse coordinators in NSW will work through Lead Clinicians and Directors of Area Cancer Services to support oncology team meetings, develop care pathways and protocols, and provide a direct source of contact for patients and primary care physicians accessing cancer services4. In Victoria, a number of program coordinators and regional nurse coordinators have been introduced as part of the breast services enhancement program. Individual institutions have also established nurse coordinator roles for specific tumour streams. The cancer care coordinator role is a rapidly emerging one with a mandate to achieve some potentially far-reaching reforms to systems of care. To ensure these developments realise their potential, it is timely to consider the most effective ways to design and implement models of care coordination thatachieve the improvements being sought for the Australian cancer care system

Evaluation of the role of the breast care nurse at Toowoomba Base Hospital

[Executive Summary]: The Supporting Rural Women with Breast Cancer Project started in Toowoomba in January 2005 with a Breast Care Nurse in a full time position in July 2005. The aim of the project is to develop and implement a revised multidisciplinary model of care resulting in the reorganisation and enhanced coordination of breast care services provided by Toowoomba Health Service District. A key deliverable under the service agreement with the Australian Government is the implementation of an evaluation plan and the compilation of an evaluation report. A decision on continuation of project initiatives will be informed in part by the results of the evaluation reported herein which was conducted by the Centre for Rural and Remote Area Health (CRRAH) based at the University of Southern Queensland. Structured questionnaires were used for both patient and stakeholder feedback. Fifty-one former breast cancer patients were interviewed by telephone. Twenty questions polled patients’ views on their access to the Breast Care Nurse and the nurse’s role in coordinating care, referral to other health professionals, and in providing information and psychosocial, emotional and practical support. Stakeholders received the questionnaire through the Toowoomba Health Services internal email system and returned completed questionnaires by reply paid mail to CRRAH. The questions were designed to provide views on the support that the Breast Care Nurse had made to a multi disciplinary treatment regimen. Views on the reasons for success or failure of the programme were also elicited. Widespread knowledge of the Breast Care Nurse prior to breast cancer treatment was poor; patients were unaware of the Breast Care Nurse until their first contact with her which was usually at the Surgical Outpatients Clinic held at the BreastScreen Toowoomba Service. More information about the position and role could be made available through GPs. Results from the patients revealed enormous gratitude for the support that they received from the Breast Care Nurse. There was overwhelming agreement that the timing of contact, ease of accessibility, information provided and support offered was extremely valuable in making their treatment and recovery easier. The vast majority of participants would recommend to their friends that they should attend hospitals with a Breast Care Nurse. Similar sentiments about the value of the Breast Care Nurse were received from stakeholders who recognised the benefit of the position not only to patients but also to the multidisciplinary team members in terms of coordination and liaison. However stakeholders did believe that a multidisciplinary team approach had not yet been fully achieved. The importance of maintaining a full time position of Breast Care Nurse was noted by both patients and stakeholders as accessibility of the nurse to patients was a key feature of the success of the programme. The study was in agreement with several other Australian reports all of which have demonstrated the success of dedicated Breast Care Nurses. The recommendation from the evaluation team is that the position of a full time Breast Care Nurse should be maintained. The Breast Care Nurse model is one that could be used successfully to support other medical condition

The value of a breast care nurse in supporting rural and remote cancer patients in Queensland

The role of the Breast Care Nurse in Queensland's Supporting Rural Women with Breast Cancer Project was evaluated by mixed methodology. Through questionnaire and interview patients provided views about the nurse's role under categories of Awareness, Access, Coordination, Information and Psychosocial, Emotional and Practical support. Of the 51 participants 37 resided in rural and remote areas with 18 living between 100 and 500 miles from specialised breast care services. The BCN met with patients at their regular hospital visits and was available by telephone at any time. There was overwhelming agreement among the participants that the timing of contact, ease of accessibility, information provided and support offered were extremely valuable in making their treatment and recovery easier. The vast majority of participants would recommend hospitals with a BCN to their friends. Members of the multidisciplinary care team provided views on Awareness of the BCN, Influence on Care Management, Communication and Patient Outcomes. They recognised the benefits of the BCN to patients and to coordination and liaison of the team. The findings concur with unpublished Australian reports that demonstrate the success of dedicated Breast Care Nurses. The BCN model of care could be used successfully to support other medical conditions

Living with breast cancer: the influence of rurality on women's suffering and resilience. A postmodern feminist inquiry

This paper focuses on rural living as a dimension of women's experiences of living through breast cancer. The findings presented emanate from a feminist narrative research project that examined the experiences of rural women from south-west Queensland who were long-term survivors of breast cancer. This project aimed to listen, report and interpret rural women's stories of resilience in surviving breast cancer and moving on with their lives. The participants reported that there were both positive and negative aspects of living in a rural setting, especially when ill. Eight of the nine participants, however, felt strongly that the positive aspects of rural living outweighed the difficulties. This suggests that rurality in the context of health and illness must be considered as a multifaceted dimension, with resources to support cancer survivors building on the existing strengths in rural communities

Evaluation of directional vacuum-assisted breast biopsy: Report for the National Breast Cancer Centre final report, CHERE Project Report No 21

This project was commissioned by the National Breast Cancer Centre (NBCC). The objectives of the project, as set out in the call for expressions of interest, were to determine: 1. The costs associated with the introduction and use of directional vacuum-assisted breast biopsy(DVA breast biopsy) in Australia; and 2. Whether directional vacuum-assisted breast biopsy used for diagnostic purposes is cost-effectivein Australia when compared to core biopsy. The motivation for commissioning the project was an assessment of directional vacuum-assisted breast biopsy conducted by the Medical Services Advisory Committee (MSAC) which concluded that the procedure is safe and more effective than core biopsy. Although a cost-effectiveness analysis was not conducted as part of the MSAC study, MSAC recommended that the costs associated with the procedure be investigated and that, pending a review of costs, the procedure receive interim Medicare funding at a higher level than was previously available. For the project reported here, data was required to be collected from both public and private sectors on the cost of introducing and using DVA breast biopsy and a cost-effectiveness analysis (CEA) conducted on the introduction and use of DVA breast biopsy with and without a prone table. The research question for the CEA was What is the impact on costs and number of open biopsies performed of using DVA breast biopsy compared to core biopsy for micro-calcification lesions? It is important to note that this question specifies both the outcome the CEA (change in the number of core biopsies performed) and that the investigation was to be confined to micro-calcification lesions only. An expert multidisciplinary working group was assembled to oversee the project. Following collection of data an interim report was produced for the working group. As DVABB is a relatively new technology in Australia the interim report indicated that the current number of sites performing DVABB and the level of experience of users was insufficient to provide meaningful data to achieve the project aims. On the advice of the working group it was agreed to suspend the project at this juncture. The NBCC will consider repeating the survey in the future.Breast cancer, diagnostics, breast biopsy, Australia

Independent predictors of breast malignancy in screen-detected microcalcifications: biopsy results in 2545 cases

Background: Mammographic microcalcifications are associated with many benign lesions, ductal carcinoma in situ (DCIS) and invasive cancer. Careful assessment criteria are required to minimise benign biopsies while optimising cancer diagnosis. We wished to evaluate the assessment outcomes of microcalcifications biopsied in the setting of population-based breast cancer screening. Methods: Between January 1992 and December 2007, cases biopsied in which microcalcifications were the only imaging abnormality were included. Patient demographics, imaging features and final histology were subjected to statistical analysis to determine independent predictors of malignancy. Results: In all, 2545 lesions, with a mean diameter of 21.8 mm (s.d. 23.8 mm) and observed in patients with a mean age of 57.7 years (s.d. 8.4 years), were included. Using the grading system adopted by the RANZCR, the grade was 3 in 47.7%; 4 in 28.3% and 5 in 24.0%. After assessment, 1220 lesions (47.9%) were malignant (809 DCIS only, 411 DCIS with invasive cancer) and 1325 (52.1%) were non-malignant, including 122 (4.8%) premalignant lesions (lobular carcinoma in situ, atypical lobular hyperplasia and atypical ductal hyperplasia). Only 30.9% of the DCIS was of low grade. Mammographic extent of microcalcifications >15 mm, imaging grade, their pattern of distribution, presence of a palpable mass and detection after the first screening episode showed significant univariate associations with malignancy. On multivariate modeling imaging grade, mammographic extent of microcalcifications >15 mm, palpable mass and screening episode were retained as independent predictors of malignancy. Radiological grade had the largest effect with lesions of grade 4 and 5 being 2.2 and 3.3 times more likely to be malignant, respectively, than grade 3 lesions. Conclusion: The radiological grading scheme used throughout Australia and parts of Europe is validated as a useful system of stratifying microcalcifications into groups with significantly different risks of malignancy. Biopsy assessment of appropriately selected microcalcifications is an effective method of detecting invasive breast cancer and DCIS, particularly of non-low-grade subtypes.G Farshid, T Sullivan, P Downey, P G Gill, and S Pieters

A survey of the breast care nurse role in the provision of information and supportive care to Australian women diagnosed with breast cancer

Aim: To explore the role of the Australian breast care nurse in the provision of information and support to women with breast cancer, with a focus on the differences experienced depending on geographic work context. Design: A cross-sectional study. Methods: This study conducted in 2013, involved surveying BCNs currently working in Australia, using a newly developed self-report online survey. Results: Fifty breast care nurses completed the survey, 40% from major cities, 42% from inner regional Australia and 18% from outer regional, remote and very remote Australia. Patterns of service indicated higher caseloads in urban areas, with fewer kilometres served. Breast care nurses in outer regional, remote and very remote areas were less likely to work in multi-disciplinary teams and more likely to spend longer consulting with patients. Breast care nurses reported they undertook roles matching the competency standards related to the provision of education, information and support; however, there were barriers to fulfilling competencies including knowledge based limitations, time constraints and servicing large geographical areas. Conclusions: This was the first Australian study to describe the role of the breast care nurse nationally and the first study to investigate breast care nurses perceived ability to meet a selection of the Australian Specialist Breast Nurse Competency Standards. Important differences were found according to the geographical location of breast care nurses

Evidence-based psychosocial clinical practice guidelines for women with breast cancer

Women diagnosed with breast cancer suffer significant emotional morbidity in addition to the medical aspects of the disease. Research shows that up to 45% of women suffer from anxiety or depressive disorders that can impact their own functioning, as well as that of their family. Therefore, the psychosocial needs for women diagnosed with breast cancer are an important consideration in providing medical care. Based on the best available evidence on the psychosocial aspects of breast cancer management, the Australian National Health and Medical Research Council's (NHMRC) National Breast Cancer Centre Psychosocial Working Group developed clinical practice guidelines for application by all members of the treatment team. This multi-disciplinary working group included oncologists, psychiatrists, surgeons, general practitioners (GP's), nurses and consumers. These guidelines are simple, patient specific and user friendly. The aim of this paper is to introduce these evidence-based psychosocial clinical guidelines to health professionals involved in the care of women with breast cancer. The ultimate goal of introducing these guidelines is to improve psychosocial and quality of life outcomes for these women and their families.published_or_final_versio

BreastScreen Australia evaluation : a review of methodological options for evaluating the effect of BreastScreen Australia on breast cancer mortality

This report provides evidence-based recommendations for appropriate and cost-effective methods that could be used to evaluate the impact of the national BreastScreen Australia population-based mammographic screening program on mortality from female breast cancer. The report represents a significant collaboration between the Australian Government, the National Breast Cancer Centre as well as Australian and international experts in mammography research and evaluation, epidemiology and health services research.The recommendations are based on a review of national and international evidence on approaches used to assess the impact of mammography screening programs on breast cancer mortality in other settings. The review has used a systematic approach to assessing the strategic and methodological approaches taken in each of the studies identified and their potential limitations.The national evaluation of the BreastScreen Australia Program aims to assess the appropriateness, efficiency and effectiveness of the BreastScreen Program. The completion of this report marks an important first step in that process. In addition, the review and recommendations in this report may have broader application at an international level.<br /

Protocol for the RT Prepare Trial: a multiple-baseline study of radiation therapists delivering education and support to women with breast cancer who are referred for radiotherapy

Introduction: There is limited evidence to guide the preparation of patients for radiotherapy. This paper describes the protocol for an evaluation of a radiation therapist led education intervention delivered to patients with breast cancer in order to reduce psychological distress. Methods: A multiple-baseline study is being used. Usual care data is being collected prior to the start of the intervention at each of three sites. The intervention is delivered by radiation therapists consulting with patients prior to their treatment planning and on the first day of treatment. The intervention focuses on providing sensory and procedural information to patients and reducing pretreatment anxiety. Recruitment is occurring in three states in Australia. Eligible participants are patients who have been referred for radiotherapy to treat breast cancer. 200 patients will be recruited during a usual care phase and, thereafter, 200 patients in the intervention phase. Measures will be collected on four occasions—after meeting with their radiation oncologist, prior to treatment planning, on the first day of treatment and after treatment completion. The primary hypothesis is that patients who receive the radiotherapy preparatory intervention will report a significantly greater decrease in psychological distress from baseline to prior to radiotherapy treatment planning in comparison with the usual care group. Secondary outcome measures include concerns about radiotherapy, patient knowledge of radiotherapy, patient preparedness and quality of life. Patient health system usage and costs will also be measured. Multilevel mixed effects regression models will be applied to test for intervention effects. Ethics Ethics approval has been gained from Curtin University and the three recruiting sites. Dissemination Results will be reported in international peer reviewed journals. Trial registration number Australian and New Zealand Clinical Trials Registration: ACTRN12611001000998