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A vital component of research is patient and public involvement (PPI). The challenges of PPI increase when conducting cross-cultural research into sensitive subjects with marginalised ethnic minority groups.To present the authors' reflections on conducting peer interviews with members of Roma, Gypsy and Traveller communities.The authors provide examples of reflections on collecting data from a participatory research project that explored Gypsies, Roma and Travellers' experiences of cancer in their communities. They derived the reflections from audio-recorded, post-interview debriefs with co-researchers from the same ethnic backgrounds as interviewees ('peer researchers'). The main challenges for the peer researchers were cultural, linguistic and pragmatic, all fundamentally related to exploring a sensitive health topic through the lens of ethnicity.Peer researchers recognised their role in building bridges between participants and the research team. They did this by establishing a relationship of trust, minimising distress, representing the views of their communities and obtaining data to meet the aims of the project. Peer researchers perform multiple roles to assist in cross-cultural data collection in participatory research.This article highlights underexplored aspects of peer researchers' work that have implications for the planning and conduct of cross-cultural research with marginalised groups.

Aim: Depression experienced by people with colorectal cancer (CRC) is an important clinical problem affecting quality of life. Recognition of depression at key points in the pathway enables timely referral to support. This study aimed to examine depression before and 5 years after surgery to examine its prevalence and identify determinants. \ud \ud Method: The ColoREctal Wellbeing (CREW) study is a prospective UK cohort study involving 872 adults with nonmetastatic CRC recruited before surgery with curative intent. Questionnaires completed before surgery and 3, 9, 15, 24, 36, 48 and 60 months after surgery captured socio‐demographics and assessed depression (Centre for Epidemiologic Studies Depression Scale, CES‐D) and other psychosocial factors. Clinical details were also gathered. We present the prevalence of clinically significant depression (CES‐D ≥ 20) over time and its predictors assessed before and 2 years after surgery. \ud \ud Results: Before surgery, 21.0% of the cohort reported CES‐D ≥ 20 reducing to 14.7% 5 years after surgery. Presurgery risk factors predicting subsequent depression were clinically significant depression and anxiety, previous mental health service use, low self‐efficacy, poor health, having neoadjuvant treatment and low social support. Postsurgery risk factors at 2 years predicting subsequent depression were clinically significant depression, negative affect, cognitive dysfunction, accommodation type and poor health. \ud \ud Conclusion: Depression is highly pervasive in people with CRC, exceeding prevalence in the general population across follow‐up. Our findings emphasize the need to screen and treat depression across the pathway. Our novel data highlight key risk factors of later depression at important and opportune time points: before surgery and at the end of routine surveillance. Early recognition and timely referral to appropriate support is vital to improve long‐term psychological outcomes.

Background Socio-cultural factors may influence the uptake of breast cancer treatments. This study aimed to explore these socio-cultural influences on treatment decision-making for women in Ghana. Method An ethnographic approach was adopted. Observation was conducted of women newly diagnosed with breast cancer, nominated relatives, nurses and doctors at a breast clinic in Ghana. Semi-structured interviews followed participant observation. Thematic analysis was employed. Findings Over 16 weeks (July 2017–November 2017), 31 participants were observed and 29 took part in semi-structured interviews. Three overarching themes were identified: (1) unequal power relationships; (2) Language barriers and (3) structural constraints. Following a breast cancer diagnosis, essential information necessary for treatment decision making is ‘hidden’ from women due to an unequal patient-provider relationship. Patients acknowledged cultural behaviours of deference to experts. Doctors deliberately misrepresented treatment information to women to encourage them to undergo surgical treatment. Structural issues such as the lack of privacy during consultations hindered quality patient engagement with decision-making. High treatment costs and the lack of resources to assist women with fertility after treatment impeded open discussions around these issues. Language barriers included a lack of terms in the local Twi language to explain cancer and its treatment. There was also an absence of appropriate information materials. Conclusion Findings highlight the need for health professionals to be aware of the socio-cultural factors that limit access to quality information which is needed for informed treatment decision making. Policies that aim to provide adequate logistics; increase staffing levels; improve staff cultural awareness training and remove financial barriers are recommended.

Background Future innovations in science and technology with an impact on multimodal breast cancer management from a surgical perspective are discussed in this narrative review. The work was undertaken in response to the Commission on the Future of Surgery project initiated by the Royal College of Surgeons of England. Methods Expert opinion was sought around themes of surgical de-escalation, reduction in treatment morbidities, and improving the accuracy of breast-conserving surgery in terms of margin status. There was emphasis on how the primacy of surgical excision in an era of oncoplastic and reconstructive surgery is increasingly being challenged, with more effective systemic therapies that target residual disease burden, and permit response-adapted approaches to both breast and axillary surgery. Results Technologies for intraoperative margin assessment can potentially half re-excision rates after breast-conserving surgery, and sentinel lymph node biopsy will become a therapeutic procedure for many patients with node-positive disease treated either with surgery or chemotherapy as the primary modality. Genomic profiling of tumours can aid in the selection of patients for neoadjuvant and adjuvant therapies as well as prevention strategies. Molecular subtypes are predictive of response to induction therapies and reductive approaches to surgery in the breast or axilla. Conclusion Treatments are increasingly being tailored and based on improved understanding of tumour biology and relevant biomarkers to determine absolute benefit and permit delivery of cost-effective healthcare. Patient involvement is crucial for breast cancer studies to ensure relevance and outcome measures that are objective, meaningful, and patient-centred.

Sin financiación 32.976 JCR (2020) Q1, 7/242 Oncology 8.590 SJR (2021) Q1, 2/133 Hematology No data IDR 2020 UEM

BACKGROUND Early diagnosis and treatment are key to reducing deaths from cancer, but people from Black and Minority Ethnic (BME) groups are more likely to encounter delays in entering the cancer care system. Roma, Gypsies and Travellers are ethnic minorities who experience extreme health inequalities. OBJECTIVE To explore the experiences of cancer diagnosis, treatment and care among people who self-identify as Roma or Gypsies and Travellers. METHODS A participatory qualitative approach was taken. Peer researchers conducted semi-structured interviews (n = 37) and one focus group (n = 4) with community members in Wales and England, UK. RESULTS Cancer fatalism is declining, but Roma, Gypsies and Travellers experience barriers to cancer healthcare at service user, service provider and organisational levels. Communication was problematic for all groups, and Roma participants reported lack of access to interpreters within primary care. Clear communication and trusting relationships with health professionals are highly valued and most frequently found in tertiary care. CONCLUSION This study suggests that Roma, Gypsies and Travellers are motivated to access health care for cancer diagnosis and treatment, but barriers experienced in primary care can prevent or delay access to diagnostic and treatment services. Organisational changes, plus increased cultural competence among health professionals, have the potential to reduce inequalities in early detection of cancer.

OBJECTIVE: Troublesome hot flushes and night sweats (HFNS) are experienced by many women after treatment for breast cancer, impacting significantly on sleep and quality of life. Cognitive behavioural therapy (CBT) is known to be effective for the alleviation of HFNS. However, it is not known if it can effectively be delivered by specialist nurses. We investigated whether group CBT, delivered by breast care nurses (BCNs), can reduce the impact of HFNS.METHODS: We recruited women with primary breast cancer following primary treatment with seven or more HFNS/week (including 4/10 or above on the HFNS problem rating scale), from six UK hospitals to an open, randomised, phase 3 effectiveness trial. Participants were randomised to Group CBT or usual care (UC). The primary endpoint was HFNS problem rating at 26 weeks after randomisation. Secondary outcomes included sleep, depression, anxiety and quality of life.RESULTS: Between 2017 and 2018, 130 participants were recruited (CBT:63, control:67). We found a 46% (6.9-3.7) reduction in the mean HFNS problem rating score from randomisation to 26 weeks in the CBT arm and a 15% (6.5-5.5) reduction in the UC arm (adjusted mean difference -1.96, CI -3.68 to -0.23, P = .039). Secondary outcomes, including frequency of HFNS, sleep, anxiety and depression all improved significantly.CONCLUSION: Our results suggest that specialist nurses can be trained to deliver CBT effectively to alleviate troublesome menopausal hot flushes in women following breast cancer in the NHS setting.

Background The incidence of cancer is increasing worldwide, which has led to greater public health focus on primary prevention. Ethnic minorities have lower awareness of cancer risk factors and services, and are at greater risk of cancer mortality. While Gypsies, Roma and Travellers have poor health outcomes even in comparison with other ethnic minorities, little is known about how they view and enact primary prevention. This study takes a participatory approach to explore knowledge and experience of cancer prevention and screening in these communities. Methods Peer researchers conducted interviews (n = 37) and a focus group (n = 4) with a purposive sample of community members in Wales and South-West England. Participants self-identified as Roma (from Slovakia and Romania) or as Gypsies, Travellers or Showpeople (here described as Gypsy/Travellers). A third of the sample were Roma, and a quarter male, with ages ranging from 18 to 77 years. Data were collected from October 2018 to March 2019. Results Women and men knew that lifestyle factors, such as healthy diet, stopping smoking, drinking less alcohol and using sun protection, contribute to cancer risk reduction. However, there was a widespread lack of confidence in the effectiveness of these measures, particularly in relation to smoking. Traditional cultural beliefs were shared by Roma and Gypsy/Travellers, but did not necessarily affect the behaviour of individuals. Most women participated in cervical and breast screening but few Gypsy/Traveller men would engage with bowel screening, which conflicted with community ideals of stoical masculinity. Roma participants described language barriers to screening, with confusion about differences in timing and eligibility between the UK and Slovakian programmes; this led some to access screening abroad. Conclusion This study provides new knowledge about how Gypsies, Roma and Travellers keep healthy and prevent disease, giving insights into similarities and differences between ages, sexes and communities. These culturally distinct and high-need ethnic minorities have specific needs in relation to cancer prevention and screening, which merit targeted and acceptable health promotion to reduce health inequalities.

Women who have been treated for breast cancer may experience vulvo-vaginal atrophy (VVA)/genitourinary syndrome of menopause (GSM). This is a progressive condition and will not improve without treatment. Whilst vaginal oestrogen is the most effective treatment for GSM, many breast cancer survivors and clinicians remain reluctant to use it. Laser therapy is emerging as an alternative treatment for this condition but there is little evidence available as to its value in this setting. We undertook a systematic literature review to identify available evidence for the use of laser therapy for VVA in women with breast cancer. There are a number of small studies which suggest an improvement in vaginal health in this group. However, these are all small, non-randomised studies and there are a number of key questions which need to be answered before this treatment can be implemented into practice.

Background Fear of cancer recurrence (FCR) is common in people affected by breast cancer. FCR is associated with increased health service and medication use, anxiety, depression and reduced quality of life. Existing interventions for FCR are time and resource intensive, making implementation in a National Health Service (NHS) setting challenging. To effectively manage FCR in current clinical practice, less intensive FCR interventions are required. Mini-AFTERc is a structured 30-min counselling intervention delivered over the telephone and is designed to normalise moderate FCR levels by targeting unhelpful behaviours and misconceptions about cancer recurrence. This multi-centre non-randomised controlled pilot trial will investigate the feasibility of delivering the Mini-AFTERc intervention, its acceptability and usefulness, in relation to specialist breast cancer nurses (SBCNs) and patients. This protocol describes the rationale, methods and analysis plan for this pilot trial of the Mini-AFTERc intervention in everyday practice. Methods This study will run in four breast cancer centres in NHS Scotland, two intervention and two control centres. SBCNs at intervention centres will be trained to deliver the Mini-AFTERc intervention. Female patients who have completed primary breast cancer treatment in the previous 6 months will be screened for moderate FCR (FCR4 score: 10‑14). Participants at intervention centres will receive the Mini-AFTERc intervention within 2 weeks of recruitment. SBCNs will audio record the intervention telephone discussions with participants. Fidelity of intervention implementation will be assessed from audio recordings. All participants will complete three separate follow-up questionnaires assessing changes in FCR, anxiety, depression and quality of life over 3 months. Normalisation process theory (NPT) will form the framework for semi-structured interviews with 20% of patients and all SBCNs. Interviews will explore participants’ experience of the study, acceptability and usefulness of the intervention and factors influencing implementation within clinical practice. The ADePT process will be adopted to systematically problem solve and refine the trial design. Discussion Findings will provide evidence for the potential effectiveness, fidelity, acceptability and practicality of the Mini-AFTERc intervention, and will inform the design and development of a large randomised controlled trial (RCT). Trial registration ClinicalTrials.gov: NCT0376382. Registered 4th December 2018, https://clinicaltrials.gov/ct2/show/NCT03763825

Purpose To investigate unmet needs of patients with colorectal cancer (CRC) at the end of treatment and whether unmet needs improve over time. Identify predictors of need following treatment and whether unmet need is associated with worse health-related quality of life (HRQoL). Methods As part of the UK ColoREctal Wellbeing (CREW) cohort study, patients treated for CRC completed the Supportive Care Needs Survey Short Form-34 (SCNS SF-34) 15 and 24 months following surgery, along with questionnaires measuring HRQoL, wellbeing, life events, social support, and confidence to manage their cancer before surgery, 3, 9, 15, and 24 months post-surgery. Results The SCNS SF-34 was completed by 526 patients at 15 months and 510 patients at 24 months. About one-quarter of patients had at least one moderate or severe unmet need at both time points. Psychological and physical unmet needs were the most common and did not improve over time. Over 60% of patients who reported 5 or more moderate or severe unmet needs at 15 months experienced the same level of unmet need at 24 months. HRQoL at the beginning of treatment predicted unmet needs at the end of treatment. Unmet needs, specifically physical, psychological, and health system and information needs, were associated with poorer health and HRQoL at the end of treatment. Conclusions Unmet needs persist over time and are associated with HRQoL. Evaluation of HRQoL at the start of treatment would help inform the identification of vulnerable patients. Assessment and care planning in response to unmet needs should be integrated into person-centred care. Implications for Cancer Survivors Early identification of CRC patients at risk of unmet needs will help infrom personalised survivorship care plans. The implementation of personalised and tailored services are likely to confer HRQoL gains.

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. Electronic supplementary material The online version of this article (10.1007/s00520-019-04762-9) contains supplementary material, which is available to authorized users.

This article explores the concept of liminality and its potential application to understand the experience of being diagnosed and receiving treatment for head and neck cancer.The article describes how we identified liminality in people who had received surgical treatment of head and neck cancer and why it is important that the clinical team understand and consider liminality in their interventions, to improve outcomes. Background Head and neck cancer is a disease that may affect the way an individual looks and functions, specifically with regard to eating and drinking. This qualitative study identified the perceptions of people who had been diagnosed with head and neck cancer and had undergone surgical treatment, to develop our understanding of what happens to people beyond their physical recovery in hospital. Methods We carried out 1:1 face-to-face interviews with people in the acute phase of recovery following head and neck cancer surgery. We analysed and verified themes from the data, using an interpretive phenomenological methodology. Results The study identified a liminal phase which people described during their recovery from head and neck cancer surgery. Individuals described no longer being the people they were before surgery, but not yet the people they would be. We explored this concept and suggest ways in which the clinical team may identify and explore liminality post head and neck surgery. This information may help clinical teams to support people manage complex issues related to the sense of self, identity and recovery after head and neck cancer surgery.

Purpose: this research was initiated to explore the experiences and important elements of swallow therapy in people following surgery for treatment of head and neck cancer.Methods: one to one, face to face interviews were conducted with people with head and neck cancer post oral reconstructive surgery (free, pedicled or bony flap), 7-14 days post-surgery. Analysis was conducted using interpretive phenomenology.Results: analysis of interviews from 15 patients identified two overarching themes: ‘I never dreamt’ and ‘They look at you and they speak to you’. There was no way to adequately prepare for the enormity of surgery and its consequences, however the way health professionals interacted and communicated with the person, rather than their altered and disfigured selves was healing and therapeutic.Conclusions: novel ways to prepare people for head and neck cancer surgery, and support in recovery are required, including ways to connect and help people feel human again.

IntroductionThere is a global interest in cancer immunotherapy. Clinical trials have found that one group, immune checkpoint inhibitors (ICIs), has demonstrated clinical benefits across various cancers. However, research focused on the experiences of people affected by cancer who have undergone this treatment using qualitative methodology is currently limited. Moreover, little is known about the experiences and education needs of the healthcare staff supporting the people receiving these immunotherapies. This study therefore seeks to explore the experiences of using ICIs by both the people affected by cancer and the healthcare professionals who support those people, and use the findings to make recommendations for ICI supportive care guidance development, cancer immunotherapy education materials for healthcare professionals, cancer policy and further research.Methods and analysisPatient participants (n=up to 30) will be recruited within the UK. The sample will incorporate a range of perspectives, sociodemographic factors, diagnoses and ICI treatments, yet share some common experiences. Healthcare professionals (n=up to 15) involved in supporting people receiving immunotherapy will also be recruited from across the UK. Data will be generated through in-depth, semistructured interviews. Reflexive thematic analysis will be used to obtain thorough understanding of individual’s perspectives on, and experiences of, immunotherapy. Study dates are as follows: December 2019–March 2022.Ethics and disseminationThe research will be performed in accordance with the UK Policy for Health and Social Care Research and Cardiff University’s Research Integrity and Governance Code of Practice (2018). The study received ethical approval from the West Midlands and Black Country Research Ethics Committee in October 2019. Health Research Authority and Health and Care Research Wales approvals were confirmed in December 2019. All participants will provide informed consent. Findings will be published in peer-reviewed journals, non-academic platforms, the Macmillan Cancer Support website, disseminated at relevant national and international conferences and presented via a webinar. The study is listed on the National Institute for Health Research (NIHR) Clinical Research Network Central Portfolio.

Introduction Women who have been treated for breast cancer identify vasomotor symptoms, such as hot flushes and night sweats (HFNS), as a serious problem. An estimated 550 000 people live in the UK today with a diagnosis of breast cancer and up to 70% experience HFNS. Estrogen replacement remains the most effective treatment for hot flushes. However, this is contraindicated in the majority of women with estrogen‐dependent breast cancer. Fewer than 50% of women with estrogen receptor (ER) ‐positive breast cancer complete the recommended 5 years of endocrine treatment—tamoxifen and aromatase inhibitors (AIs). This lack of adherence leads to a 20% excess breast cancer mortality. This lack of adherence may be due to unacceptable side effects such as HFNS. Objectives Patient members of the National Cancer Research Institute UK Breast Clinical Studies Group identified that there is very little research into the management of symptoms after breast cancer treatment. In response we established a Working Party on Symptom Management. The members all have a particular interest in the management of HFNS, and include patients, as well as clinical and academic partners representing oncology, psychology, gynaecology, complementary therapies and the voluntary sector. Methods We gauged current clinical practice of the management of HFNS by surveying breast cancer patients, general practitioners (GPs) and healthcare professionals (HCPs) and we will present these data. Results Forty percent of patients reported that no HCPs or GPs had asked them about HFNS. Despite >90% of GPs and HCPs reporting that they prescribed drugs to alleviate HFNS, only 26% of the patients had been offered drugs and fewer than 2% said they helped; 31% of the patients said that the HFNS were severe enough for them to consider stopping endocrine therapy. Conclusion If women are to be helped to adhere to their life‐saving treatment, new approaches need to be developed to ameliorate HFNS.

BackgroundThe ColoREctal Wellbeing (CREW) study is the first study to prospectively recruit colorectal cancer (CRC) patients, carry out the baseline assessment pre-treatment and follow patients up over five years to delineate the impact of treatment on health and wellbeing.MethodsCRC patients received questionnaires at baseline (pre-surgery), 3, 9, 15, 24, 36, 48 and 60 months. The primary outcome was Quality of Life in Adult Cancer Survivors (QLACS); self-efficacy, mental health, social support, affect, socio-demographics, clinical and treatment characteristics were also assessed. Representativeness was evaluated. Predictors at baseline and at 24 months of subsequent worsened quality of life (QOL) were identified using multivariable regression models.ResultsA representative cohort of 1017 non-metastatic CRC patients were recruited from 29 UK cancer centres. Around one third did not return to pre-surgery levels of QOL five years after treatment. Baseline factors associated with worsened QOL included >2 comorbidities, neoadjuvant treatment, high negative affect and low levels of self-efficacy, social support and positive affect. Predictors at 24 months included older age, low positive affect, high negative affect, fatigue and poor cognitive functioning.ConclusionsSome risk factors for poor outcome up to five years following CRC surgery, such as self-efficacy, social support and comorbidity management, are amenable to change. Assessment of these factors from diagnosis to identify those most likely to need support in their recovery is warranted. Early intervention has the potential to improve outcomes.

Objective: More people are living with the consequences of cancer and comorbidity. We describe frequencies of comorbidities in a colorectal cancer cohort and associations with health and well‐being outcomes up to 5 years following surgery.Methods: Prospective cohort study of 872 colorectal cancer patients recruited 2010 to 2012 from 29 UK centres, awaiting curative intent surgery. Questionnaires administered at baseline (pre‐surgery), 3, 9, 15, 24 months, and annually up to 5 years. Comorbidities (and whether they limit activities) were self‐reported by participants from 3 months. The EORTC QLQ‐C30 and QLQ‐CR29 assessed global health/quality of life (QoL), symptoms, and functioning. Longitudinal analyses investigated associations between comorbidities and health and well‐being outcomes.Results: At baseline, the mean age of participants was 68 years, with 60% male and 65% colon cancer. Thirty‐two per cent had 1 and 40% had ≥2 comorbidities. The most common comorbidities were high blood pressure (43%), arthritis/rheumatism (32%), and anxiety/depression (18%). Of those with comorbidities, 37% reported at least 1 that limited their daily activities. Reporting any limiting comorbidities was associated with poorer global health/QoL, worse symptoms, and poorer functioning on all domains over 5‐year follow‐up. Controlling for the most common individual comorbidities, depression/anxiety had the greatest deleterious effect on outcomes.Conclusions: Clinical assessment should prioritise patient‐reported comorbidities and whether these comorbidities limit daily activities, as important determinants of recovery of QoL, symptoms, and functioning following colorectal cancer. Targeted interventions and support services, including multiprofessional management and tailored assessment and follow‐up, may aid recovery of health and well‐being in these individuals.

Background Women who have been treated for breast cancer may identify vasomotor symptoms, such as hot flushes and night sweats (HFNS), as a serious problem. HFNS are unpleasant to experience and can have a significant impact on daily life, potentially leading to reduced adherence to life saving adjuvant hormonal therapy. It is known that Cognitive Behavioural Therapy (CBT) is effective for the alleviation of hot flushes in both well women and women who have had breast cancer. Most women with breast cancer will see a breast care nurse and there is evidence that nurses can be trained to deliver psychological treatments to a satisfactory level, whilst also maintaining treatment fidelity. The research team will assess whether breast care nurses can effectively deliver a CBT intervention to alleviate hot flushes in women with breast cancer. Methods This study is a multi-centre phase III individually randomised controlled trial of group CBT versus usual care to reduce the impact of hot flushes in women with breast cancer. 120–160 women with primary breast cancer experiencing seven or more problematic HFNS a week will be randomised to receive either treatment as usual (TAU) or participation in the group CBT intervention plus TAU (CBT Group). A process evaluation using May’s Normalisation Process Theory will be conducted, as well as practical and organisational issues relating to the implementation of the intervention. Fidelity of implementation of the intervention will be conducted by expert assessment. The cost effectiveness of the intervention will also be assessed. Discussion There is a need for studies that enable effective interventions to be implemented in practice. There is good evidence that CBT is helpful for women with breast cancer who experience HFNS, yet it is not widely available. It is not yet known whether the intervention can be effectively delivered by breast care nurses or implemented in practice. This study will provide information on both whether the intervention can effectively help women with hot flushes and whether and how it can be translated into routine clinical practice. Trial registration ISRCTN 12824632. Registered 25–01-2017. Electronic supplementary material The online version of this article (10.1186/s12905-018-0550-z) contains supplementary material, which is available to authorized users.

Jo Brett,1 Mary Boulton,1 Debbie Fenlon,2 Nick J Hulbert-Williams,3 Fiona M Walter,4 Peter Donnelly,5 Bernadette A Lavery,6 Adrienne Morgan,7 Carolyn Morris,7 Eila K Watson1 1Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, 2College of Human and Health Sciences, Swansea University, Swansea, Wales, 3Department of Psychology, Chester Research Unit for the Psychology of Health, University of Chester, Chester, 4Department of Public Health and Primary Care, University of Cambridge, Cambridge, 5South Devon Healthcare NHS Foundation Trust, Torbay Hospital, Torquay, 6Cancer Services, Oxford University Hospitals Foundation NHS Trust, Oxford, 7Independent Cancer Patients’ Voice, London, UK Introduction: Despite evidence of the efficacy of adjuvant endocrine therapy (AET) in reducing the risk of recurrence and mortality after treatment for primary breast cancer, adherence to AET is suboptimal. This study aimed to explore factors that influence adherence and nonadherence to AET following breast cancer to inform the development of supportive interventions.Methods: Interviews were conducted with 32 women who had been prescribed AET, 2–4years following their diagnosis of breast cancer. Both adherers (n=19) and nonadherers (n=13) were recruited. The analysis was conducted using the Framework approach.Results: Factors associated with adherence were as follows: managing side effects including information and advice on side effects and taking control of side effects, supportive relationships, and personal influences. Factors associated with nonadherence were as follows: burden of side effects, feeling unsupported, concerns about long-term AET use, regaining normality, including valuing the quality of life over length of life, and risk perception.Conclusion: Provision of timely information to prepare women for the potential side effects of AET and education on medication management strategies are needed, including provision of timely and accurate information on the efficacy of AET in reducing breast cancer recurrence and on potential side effects and ways to manage these should they arise. Trust in the doctor–patient relationship and clear patient pathways for bothersome side effects and concerns with AET are important. Training and education on AET for GPs should be considered alongside novel care pathways such as primary care nurse cancer care review and community pharmacist follow-up. Keywords: hormone therapy, oncology, patient experiences, support, follow-up

Objective The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment. Methods A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention. Results Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3–5 can be tailored to user preference and are designed to cover areas of life where CRF may have an impact: home and work life, personal relationships and emotional adjustment. Conclusions It is feasible to systematically ‘co-create’ an evidence-based and theory-driven web-based self-management intervention to support cancer survivors living with the consequences of cancer and its treatment. This is the first account of the development of a web-based intervention to support self-efficacy to manage CRF. An exploratory trial to test the feasibility and acceptability of RESTORE is now warranted. Copyright © 2015 John Wiley & Sons, Ltd.

While the UK charity Breast Cancer Care has extensive resources for women with breast cancer, this research partnership developed the first resource driven and informed by primary research with these women; exploring their needs and developing the resource according to need. Data were collected from focus groups with breast cancer survivors and telephone interviews with health professionals and experts, which explored the needs of women after primary cancer treatment and were analysed using thematic analysis. As well as information, these women needed resources to help them regain control over life, adapt to a changed body and restore lost confidence.

Lymphedema is a chronic peripheral swelling caused by a dysfunction of the lymphatic system, leading to discomfort and loss of upper limb movement. Therapies to treat or manage this swelling have limited evidence, partly because of a paucity in objective lymphatic measures. This study explored the role of near-infrared (NIR) imaging in evaluating interventions.Nine healthy volunteers underwent NIR fluoroscopy using a microdose (50 μL, 0.05% w/v) of indocyanine green to quantify lymphatic behavior before and after a 15-minute period of manual lymph drainage followed by compression garment (CG) therapy for a 10-minute period. Images were taken at the forearm and elbow after each intervention. Lymphatic function was defined by the number, size, displacement, and speed of lymph packets. The lymph parameters were analyzed to assess the effects of the interventions compared with basal values.Baseline (BL) parameters of lymph function revealed high variability in the number, size, and speed of packets between individuals. Despite this variance, both interventions showed statistically significant improvement (p 0.05) in displacement and speed at the forearm compared with BL. The velocity of transient lymph packets increased from a median of 6.7 mm/s at BL to 13.3 mm/s after manual lymphatic drainage (MLD) and 10.5 mm/s after CG.Lymphatic activity increased significantly after MLD, with relative increases being maintained after a short time period of CG application. NIR fluoroscopy has the potential to both monitor lymph pathology and provide robust parameters in the assessment of interventions.

This study has been funded by the breast cancer research charity Breast Cancer Now (Ref: 2015NovSP679). 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. Publisher PDF

This study evaluated the Beliefs about Medicine Questionnaire to explore adherence to adjuvant endocrine therapy after treatment for breast cancer (BMQ-AET). Factor structure of the BMQ-AET was explored alongside internal consistency, convergent validity and acceptability. The BMQ-AET Specific Scale fitted the original 10 item model. Internal consistency of the BMQ-AET was much improved compared to the original BMQ and convergent validity showed predicted direction of correlation, although correlation with BMQ-AET concerns scale was low. Acceptability was good. The evaluation of the BMQ-AET is encouraging, and could facilitate future research around adherence to AET.

Introduction Breast Cancer Haven (BCH) is a national UK breast cancer charity supporting people through the physical and emotional experience of breast cancer. This service evaluation aimed to identify what people expected/ hoped for from BCH, and to evaluate how well those expectations were met. Methods A link to an on-line SurveyMonkey survey was emailed out during November 2014–January 2015 to 4804 people with breast cancer who had attended BCH centres in London, Yorkshire or Hereford since 2000. Frequency analyses of pooled responses to multiple choice questions were downloaded from the SurveyMonkey website. Individual free text responses were analysed by coding into common themes, clustered into categories. Results A total of 980 BCH users (98.0% female, peak age 50–54 years) completed the survey; 20.4% of those invited. Most attended a BCH centre during 2012–14, nearly half travelled 30–60 min, most visited 6–10 times. Emotional (77.6%) and physical (67.2%) were the most frequent concerns. Breast cancer information, nutritional therapy and the Welcome Day were considered the most helpful therapies. Main categories of expected/hoped for factors were information and advice, emotional support, a therapeutic space and therapeutic relationships. 84.0% participants got what they expected or much more than they expected. Conclusions The findings suggest that a third sector organisation like BCH provides a support service that meets the expectations of the majority of those attending. Regular service evaluations are needed to ensure that people with breast cancer receive those aspects of care that are often lacking in the NHS setting.

Hot Flushes or Flashes are a serious problem. They impact significantly on daily life and sleep quality, affecting employment, relationships and quality of life. The only effective treatment for hot flushes is oestrogen which is contraindicated in 75% of breast cancer patients. An estimated 550,000 people now live in the UK with a diagnosis of breast cancer and up to 70% women experience disabling hot flushes which can continue for years after treatment. Studies have shown that up to 50% of patients stop taking their life-saving antioestrogen drugs before 5 years1 quite probably due to unacceptable side-effects On the initiative of the patient advocate members of the NCRI Breast Clinical Studies Group, a Working Party on Symptom Management has been established. Members of the group have a particular interest in hot flushes and include representatives from patients, oncology, psychology, gynaecology, acupuncture and the voluntary not-for-profit sector The Working Party audited current UK clinical practice for hot flushes in cancer with a short questionnaire circulated to the UK Breast Intergroup mailing list (about 800 breast cancer health professionals) and to the Breast Cancer Care Nursing Network (about 850 clinical nurse specialists/breast care nurses). The full results of the questionnaire will be presented Briefly, a small number of people were prescribed hormone replacement therapy or Progesterone (Megestrol acatate), more Clonidine and Gabapentin and many selective serotonin reuptake inhibitors (SSRIs). Although SSRIs have some effect in reducing the intensity of hot flushes, they have significant side effects including sexual dysfunction, in a group of women, many of whom are already suffering sexual problems due to anti-oestrogen drugs or premature menopause. In addition, available treatments (both pharmacological and non-pharmacological) varied across the UK. The majority (95%) of respondents to our questionnaire agreed or strongly agreed that treatment and management of hot flushes is an unmet need. The questionnaire also demonstrated inequality of access to treatment in the UK. An exploration of the US National Cancer Institute and UK clinical trials databases revealed very few studies working in this area. 21 studies in the UK, Europe and the USA since 2006. Most trials investigate non pharmacological approaches and combinations and new versions of existing approaches. There are no agreed guidelines for managing hot flushes after breast cancer, which may limit the access and availability of appropriate interventions. It is clear from our survey that clinicians are left making individual decisions based on personal experience and availability of local services, which has led to a patchy and inequitable position on the management of this troubling problem. There is a need for research to understand the physiology of flushing and to develop and test new interventions to address this intractable problem, which continues to be a cause of considerable distress to many women after breast cancer. 1. Makubate B et al Cohort study of adherence to adjuvant endocrine therapy, breast cancer recurrence and mortality.Br J Cancer. 2013;108:1515-24. This project was funded by the National Institute for Health Research Health Technology Assessment (NIHR HTA) Programme (project number 10/34/01). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HTA programme, NIHR, NHS or the Department of Health. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P3-08-09.

Purpose of the research: breast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions, and to identify their information and support needs and preferences.Methods and sample: data were collected from 28 semi-structured qualitative interviews and 2 focus groups (n = 14), with breast cancer survivors aged 70-90, and were analysed using thematic analysis.Key results: these older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals.Conclusions: many breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with comorbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age.