Ensuring nursing provision for people with metastatic breast cancer A toolkit for healthcare professionals

This toolkit contains different modules covering a range of issues; from developing your nursing service to reflect current policy and national guidelines to suggestions about changing your service. It also includes case studies from nurses in practice so you can see what others have achieved. We really hope this toolkit helps you develop the best nursing service you can for your patients with metastatic breast cancer. We envisage it as a dynamic item which will evolve over time. So it's vital you tell us what you think -please use the evaluation form (Appendix 2) so we can ensure the content of the toolkit always reflects your needs. Finally, don't forget to tell us if you do adapt or change your service so we can share your experience with other Nursing Network members. By working together we can ensure everyone affected by metastatic breast cancer receives the highest standards of specialist nursing care. Best wishes Dr Emma Pennery Dora Wheeler Clinical Director, Breast Cancer Care and Policy Officer, Breast Cancer Care Head of the Nursing Network You will see the terms 'metastatic' and 'secondary breast cancer' both used in this document. In many of our patient-facing materials we use the term secondary as patients are often more familiar with it. Introduction We are delighted to welcome you to our new toolkit. This has been developed in response to requests from members of our Nursing Network* who increasingly contact us for advice and support around developing and improving the nursing service they offer to their patients with metastatic breast cancer. * The Nursing Network has been created so you can come together with colleagues to share best practice, develop your skills and knowledge, and work more closely with Breast Cancer Care. If you spend more than 50% of your time with breast cancer patients, membership is free and essential for you and your team. Overview Module 1 -The case for change The benefits of specialist nurses in metastatic breast cancer 2.4 Coordinating and providing continuity of care 2.5 Applying specialist knowledge and skills 2.6 Coordinating complex care 2.7 Meeting information needs and empowering patients 2.8 Preventing unscheduled hospital admissions 2.9 Supporting patients in clinical decision-making Module 3 -Making the change 3.1 Identifying the number of patients diagnosed with metastatic breast cancer in your place of work 3.2 Gathering evidence of need 3.3 Harnessing support from multidisciplinary team (MDT) colleagues 3.4 Learning from others 3.5 Identifying what is needed in your place of work 3.6 Carrying out patient focus groups Module 4 -Promoting the change in your nursing service Breast Cancer Care's aspiration of increasing the number of specialist nurses for patients with metastatic breast cancer is difficult to realise in the current economic climate. However, it may be possible for breast care nursing teams to review their service provision for people with metastatic breast cancer with a view to recommending and implementing changes based on their findings. This toolkit provides guidance on how to go about this. National guidance, targets and standards The following • Knowledge of end-of-life care guidance. • Knowledge of national and local information and support to patients' families. Skills • Ability to support patients in decision making. • Ability to case-manage complex care, acting as a coordinator for patient care and liaising with all health/ social care and other professionals involved in patient care. • Advanced communication skills. • Advanced assessment skills. • Ability to discuss long-term illness issues, palliative care and end-of-life issues.* • Ability to provide information to the patient using a number of different models and tools. • Ability to identify patients who may require individual counselling. • Ability to be the patient's advocate. • Ability to support patients with a self-management approach to their care. The CNS must also: • ensure patients are given their contact details at diagnosis • have access to relevant information about the patient • be available to talk with the patient as soon as possible after a diagnosis of metastatic breast cancer* • have access to clinical supervision. Supporting guidelines • In addition to these core competencies Breast Cancer Care fully supports the RCN guidance for nursing staff Clinical standards for working in a breast specialty (2007). The standards contain essential knowledge and skills which are the prerequisites for competent nursing practice. • Breast Cancer Care also recommends that a CNS must be competent at levels 3 or 4 within the NHS Knowledge and Skills Framework. * Breast Cancer Care recognises that taking on this role may mean some healthcare professionals will need additional training. A diagram showing the attributes of specialist nurses in metastatic breast cancer Breast Cancer Care commissioned research to explore the complexity and value of the metastatic breast care specialist nursing role. This examined the clinical, emotional and financial benefits of the role. Using a combination of qualitative and quantitative research, a focus group was held with 12 nurses who predominantly cared for metastatic breast cancer patients. Here the nurses articulated the attributes of nursing required to manage these patients. See diagram overleaf. Module 2 -Excellence in practice 2.3 The benefits of specialist nurses in metastatic breast cancer Following the research (2.2) the nurses entered data into the Pandora inter-relational database, developed by University College London Hospital NHS Foundation Trust and NHS Innovations, which articulates the work of the CNS. Data from this research is used here to demonstrate the benefits of metastatic breast cancer nursing. Coordinating and providing continuity of care CNSs working with patients with metastatic breast cancer spend almost 80% of their time engaged in clinical work (see Figure 2 Breakdown of clinical work Assessment of need is a core recommendation in Supportive and Palliative Care for Adults with Cancer ( ' She (CNS) referred my son to counselling, which has really helped him. She also arranged counselling for me, but she will also sit and listen when I'm bawling my eyes out. She also told me about the local support group in my hospice. Without her I don't think I would be able to cope -she's taken stress off me. Without her I think I would have been a nervous wreck.' Patient Coordinating complex care A unique understanding of the patient experience, clinical knowledge and professional experience in metastatic breast cancer means that CNSs are able to negotiate on behalf of patients. They use highly developed coordination strategies to make pathways more efficient, applying local knowledge to speed up referrals and improve patient experience. CNSs caring for patients with metastatic breast cancer patients are often responsible for developing and leading services in providing care for this patient group. The range of clinical and physical work they undertake can be seen in Patients with metastatic breast cancer experience a range of symptoms relating to their disease and treatment such as pain, fatigue and sleeplessness (Aranda et al, 2005; ' When I was diagnosed with secondaries my GP tried to help with my pain but it was like, try this, try that, try the other, then I was allocated a specialist nurse and she is right on the ball. Twice now when my pain has become 2.5 Applying specialist knowledge and skills Metastatic breast cancer carries a considerable psychosocial morbidity (Grabasch et al, 2006). CNSs working with patients with metastatic breast cancer focus much of their clinical work on providing specialist psychosocial support. The types of psychological care/ interventions can be seen in ' I was concerned about symptoms described by a patient on the telephone -I arranged immediate review and MRI as the patient had the symptoms of spinal cord compression.' CNS narrative An in-depth knowledge of services allows CNSs to play a strategic part in evaluation. They are exposed to patient opinion and perception every day and are able to inform tools such as patient satisfaction questionnaires or support patients in partnership working. CNSs regularly caring for patients with metastatic breast cancer (at least weekly) resolve unsatisfactory patient experiences before the formal complaints process is used; they use local knowledge to achieve the best outcome, which is often in the sphere of enhancing communication or mediation. 'The PALS office say they always know when I am away.' CNS narrative Meeting information needs and empowering patients It has been recognised that there are gaps in the information provided to those with advanced cancer (DH, 2007 ' Sometimes you need to have several conversations about recurrence with patients and families -they sometimes just don't take it in the first time.' CNS narrative Assessment of information needs is a key recommendation in the NICE advanced breast cancer guidelines (2009) and the ABC1 guidelines (Cardoso, et al 2012) -CNSs with skills and knowledge of metastatic breast cancer are essential to achieve this. The expertise of CNSs caring for this patient group means they are aware of the range of issues people face and can provide information and continuing support. This experience also allows CNSs to assess the need for information where there may be gaps in provision and be at the forefront of information development. ' My nurse has helped sort out the benefits I am entitled to and got me a grant via Macmillan.' Patient 'The nurse sorted me out with a disabled badge.' Patient Not having access to a CNS in metastatic breast cancer means that supportive, tailored information is difficult to access resulting in the cancer experience being even more challenging for patients. ' The only advice we get, or the chance to ask questions, is when something is wrong, and then when we do ask we're not always given the explanation of what to expect or how it's going to affect us. There are times you want to know something and there is no-one there to ask -we can cope at the hospital, but when we come away we've got nothing.' Husband of patient Preventing unscheduled hospital admissions CNSs working in metastatic breast cancer use their expertise to facilitate appropriate admission, discharge and referral to other members of the multidisciplinary team. ' The patient was due to go to a hospice but was in hospital as a brace had not been fitted. I arranged for the local clinicians to be involved and the brace to be delivered to the hospice where a local clinician agreed to fit it; the patient was able to go to the hospice and did not have to stay in hospital.' CNS narrative CNSs working with metastatic breast cancer patients prevent emergency admissions to hospital. They provide an alternative to unscheduled care by helping keep patients in the community. They do this by working with community teams and GPs to provide clinical solutions to complex problems. Sixty per cent of the CNSs' work is dealing with community-based issues. According to the NHS Information Centre, specialised nurses prevent an unscheduled care episode approximately 26 times a year. CNSs caring for patients with metastatic breast cancer reduce new to follow-up ratios in cancer units, releasing clinic and outpatient time for new patients. A CNS specialising in metastatic breast cancer will see an average of 13 follow-up patients per week in an outpatient setting. Matched against the DH tariff this represents £53,040 in income and the potential release of 13 slots to new patients (new medical oncology £159,120 per 48 week year). This means CNSs working with metastatic breast cancer patients can speed up pathways, helping trusts meet targets and allowing new patients to be seen which allows for generation of income

Management of hot flushes in UK breast cancer patients: clinician and patient perspectives

Introduction: Menopausal problems are among the most prevalent and distressing problems following breast cancer treatment, with 70% women experiencing hot flushes and night sweats (HFNS). A working party was set up to support the development of new research into the management of these problems. Methods: We conducted surveys to explore the need as perceived by women with breast cancer and establish current UK management practices. A patient survey was conducted through a charity, Breast Cancer Care, and a health professional survey via the UK Breast Intergroup. The HFNS Problem Rating Scale was used, as well as specific questions addressing the aims of the study. Results: Six hundred and sixty-five patients responded and 185 health professionals. Twenty-eight percent women had considered stopping adjuvant endocrine treatment because of HFNS, yet 34% had never been asked about HFNS by any health professional. The most commonly offered interventions were SSRIs, such as venlafaxine, yet only 25% patients had been offered these drugs. Cognitive behavioural therapy was rarely suggested (2%) despite good evidence. Discussion: This study shows a lack of coherence in the management of HFNS in breast cancer survivors, which may lead to reduced adherence to adjuvant therapy. There is an urgent need to develop guidelines to support management of HFNS after breast cancer

Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan

To facilitate family doctor-driven follow-up for adult childhood cancer survivors, we developed a survivor care plan (SCP) for adult survivors and their family doctors. The SCP was accessible for survivors and their family doctors on a secure website and as a printed booklet. It included data on diagnosis, treatment and potential risks as well as recommendations for follow-up. Childhood cancer survivors who were off-treatment >= 5 years, aged >= 18 years and not involved in a long-term follow-up program were eligible. They were advised to visit their family doctor. The endpoints were numbers of participants, adherence of family doctors to the guidelines and satisfaction ratings. The eligibility criteria were fulfilled by 108 survivors. Three family doctors and 15 survivors refused, 10 survivors were non-responders. Of the remaining 80 survivors, 73 survivors visited 72 family doctors. Sixty-nine (96%) family doctors returned data of whom 60 (83%) fully adhered to the recommended tests. The majority of survivors and family doctors were satisfied about the SCP. A (web-based) SCP for survivors and family doctors can serve as an effective communication vehicle to provide adequate shared care by the long-term follow-up clinic and family doctors

Improving the quality and efficiency of follow-up after curative treatment for breast cancer – rationale and study design of the MaCare trial

BACKGROUND: After curative treatment for breast cancer women frequently attend scheduled follow-up examinations. Usually the follow-up is most frequent in the first 2–3 years (2–4 times a year); thereafter the frequency is reduced to once a year in most countries. Its main aim is to detect local disease recurrence, or a second primary breast cancer, but also to provide information and psychosocial support. However, the cost-effectiveness of these frequent visits is under much debate, leading to a search for less intensive and more cost-effective follow-up strategies. In this paper the design of the MaCare trial is described. This trial compares the cost-effectiveness of four follow-up strategies for curatively treated breast cancer patients. We investigate the costs and effects of nurse-led telephone follow-up and a short educational group programme. METHODS/DESIGN: The MaCare trial is a multi centre randomised clinical trial in which 320 breast cancer patients are randomised into four follow-up strategies, focussed on the first 18 months after treatment: 1) standard follow-up; 2) nurse-led telephone follow-up; 3) arm 1 with the educational group programme; 4) arm 2 with the educational group programme. Data is collected at baseline and 3, 6, 12 and 18 months after treatment. The primary endpoint of the trial is cancer-specific quality of life as measured by the global health/QoL scale of the EORTC QLQ-C30. Secondary outcomes are perceived feelings of control, anxiety, patients' satisfaction with follow-up and costs. A cost-effectiveness analysis will be performed from a societal perspective. DISCUSSION: Reduced follow-up strategies for breast cancer have not yet been widely applied in clinical practice. Improvement of psychosocial support and information to patients could lead to a better acceptance of reduced follow-up. The MaCare trial combines a reduced follow-up strategy with additional psychosocial support. Less frequent follow-up can reduce the burden on medical specialists and costs. The educational group programme can improve QoL of patients, but also less frequent follow-up can improve QoL by reducing the anxiety experienced for each follow-up visit. Results of the trial will provide knowledge on both costs and psychosocial aspects regarding follow-up and are expected in 2009

Patients' preferences for post-treatment breast cancer follow-up in primary care vs. secondary care:a qualitative study

Objective To explore patients' preferences for follow-up in primary care vs. secondary care. Methods A cross-sectional design was employed, involving semi-structured interviews with 70 female patients with a history of early-stage breast cancer. Using descriptive content analysis, interview transcripts were analysed independently and thematically by two researchers. Findings Patients expressed the strongest preference for annual visits (31/68), a schedule with a decreasing frequency over time (27/68), and follow-up > 10 years, including lifelong follow-up (20/64). The majority (56/61) preferred to receive follow-up care from the same care provider over time, for reasons related to a personal doctor-patient relationship and the physician's knowledge of the patient's history. About 75% (43/56) preferred specialist follow-up to other follow-up models. However, primary care-based follow-up would be accepted by 57% (39/68) provided that there is good communication between GPs and specialists, and sufficient knowledge among GPs about follow-up. Perceived benefits of primary care-based follow-up referred to the personal nature of the GPpatient relationship and the easy access to primary care. Perceived barriers included limited oncology knowledge and skills, time available, motivation among GPs to provide follow-up care and patients' confidence with the present specialist follow-up. Conclusions More than half of the patients were open to primary care-based follow-up. Patients' confidence with this follow-up model may increase by using survivorship care plans to facilitate communication across the primary/secondary interface and with patients. Training GPs to improve their oncology knowledge and skills might also increase patients' confidence

Responsiveness of the EQ-5D in breast cancer patients in their first year after treatment

<p>Abstract</p> <p>Background/aim</p> <p>The EQ-5D is a generic health-related quality of life (HRQoL) measure that is used for the purpose of economic evaluations of health interventions. Therefore, it has to be responsive to meaningful changes in health in the patient population under investigation. The aim of this study was to investigate the responsiveness of the EQ-5D in breast cancer patients in their first year after treatment.</p> <p>Methods</p> <p>The subscale global health of the disease-specific HRQoL measure EORTC QLQ-C30 was used as a reference instrument to determine meaningful changes in health and identify subgroups of patients: patients reporting a moderate-large deterioration, small deterioration, a small improvement, moderate-large improvement, or no change in health status. Responsiveness was evaluated by calculating standardized response means (SRMs) in the five subgroups of patients and performing analysis of variance procedures. The two HRQoL measures were filled out two weeks and one year after finalizing curative treatment for breast cancer (n = 192).</p> <p>Results</p> <p>The EQ-5D was able to capture both improvements and deteriorations in HRQoL. SRMs of the EQ VAS and EQ-5D Index were close to zero in the subgroup reporting no change and increased and decreased adequately in the subgroups reporting small and moderate changes. Additional analysis of variance procedures showed that the EQ-5D was able to differentiate between subgroups of patients with no change and moderate-large deterioration or improvement in health.</p> <p>Conclusion</p> <p>The EQ-5D seems an appropriate measure for the purpose of economic evaluations of health intervention in breast cancer patients after treatment.</p> <p>Trial registration</p> <p>Current Controlled Trials ISRCTN74071417.</p

Changing pattern of the detection of locoregional relapse in breast cancer: the Edinburgh experience

The guidelines for follow-up of breast cancer patients concentrate on the first 3–5 years, with either reduced frequency of visits or discharge after this. They also recommend mammography, but no evidence exists to inform frequency. We analyse treatable relapses in our unit from 1312 patients with early stage breast cancer treated by breast conserving surgery (BCS) and postoperative radiotherapy between 1991 and 1998 to assess appropriateness of the guidelines. A total of 110 treatable relapses were analysed. Treatable relapse developed at 1–1.5% per year throughout follow-up. Forty-eight relapses were in ipsilateral breast, 25 ipsilateral axilla, 35 contralateral breast, 2 both breasts simultaneously. Thirty-seven relapses (33.5%) were symptomatic, 56 (51%) mammographically detected, 15 (13.5%) clinically detected, 2 (2%) diagnosed incidentally. Mammography detected 5.37 relapses per 1000 mammograms. Patients with symptomatic or mammographically detected ipsilateral breast relapse had significantly longer survival from original diagnosis (P=0.0002) and from recurrence (P=0.0014) compared with clinically detected. Treatable relapse occurs at a constant rate for at least 10 years. Clinical examination detects a minority (13.5%). Relapse diagnosed clinically is associated with poorer outcome. Long-term follow-up based on regular mammography is warranted for all patients treated by BCS

Professionals’ opinion on follow-up in breast cancer patients; perceived purpose and influence of patients’ risk factors

International audienceTo provide insight into professionals' opinions on breast cancer follow-up to facilitate implementation of new follow-up strategies. The study focuses on current practice, purpose and perceived effects, and preferred frequency and duration of follow-up