IntroductionBreast cancer remains a significant scientific, clinical and societal challenge. This gap analysis has reviewed and critically assessed enduring issues and new challenges emerging from recent research, and proposes strategies for translating solutions into practice.MethodsMore than 100 internationally recognised specialist breast cancer scientists, clinicians and healthcare professionals collaborated to address nine thematic areas: genetics, epigenetics and epidemiology; molecular pathology and cell biology; hormonal influences and endocrine therapy; imaging, detection and screening; current/novel therapies and biomarkers; drug resistance; metastasis, angiogenesis, circulating tumour cells, cancer ‘stem’ cells; risk and prevention; living with and managing breast cancer and its treatment. The groups developed summary papers through an iterative process which, following further appraisal from experts and patients, were melded into this summary account.ResultsThe 10 major gaps identified were: (1) understanding the functions and contextual interactions of genetic and epigenetic changes in normal breast development and during malignant transformation; (2) how to implement sustainable lifestyle changes (diet, exercise and weight) and chemopreventive strategies; (3) the need for tailored screening approaches including clinically actionable tests; (4) enhancing knowledge of molecular drivers behind breast cancer subtypes, progression and metastasis; (5) understanding the molecular mechanisms of tumour heterogeneity, dormancy, de novo or acquired resistance and how to target key nodes in these dynamic processes; (6) developing validated markers for chemosensitivity and radiosensitivity; (7) understanding the optimal duration, sequencing and rational combinations of treatment for improved personalised therapy; (8) validating multimodality imaging biomarkers for minimally invasive diagnosis and monitoring of responses in primary and metastatic disease; (9) developing interventions and support to improve the survivorship experience; (10) a continuing need for clinical material for translational research derived from normal breast, blood, primary, relapsed, metastatic and drug-resistant cancers with expert bioinformatics support to maximise its utility. The proposed infrastructural enablers include enhanced resources to support clinically relevant in vitro and in vivo tumour models; improved access to appropriate, fully annotated clinical samples; extended biomarker discovery, validation and standardisation; and facilitated cross-discipline working.ConclusionsWith resources to conduct further high-quality targeted research focusing on the gaps identified, increased knowledge translating into improved clinical care should be achievable within five years.

Context. Despite developments in the medical management of metastatic breast cancer, little is known about the quality of life (QoL) and experience of care in women with it.Objectives. To explore QoL, experience of care, and support needs of women living with metastatic breast cancer in the U.K.Methods. Questionnaire-based, cross-sectional study, undertaken in two U.K. cancer centers and online via the Breast Cancer Care Web site, assessing QoL and experience of care in 235 women with metastatic breast cancer.Results. QoL was assessed using the Functional Assessment of Cancer TherapydBreast QoL measure. Overall, QoL was low (mean 89.0, standard deviation 21.8) for total score. Low scores were seen uniformly in physical, social, emotional, and functional well-being domains. Symptom burden was a significant problem, with over one-third of women (34%) reporting high levels of pain and other uncontrolled symptoms. In multiple regression analysis, social well-being was significantly better for older women (P < 0.001) but was lower in those with bone metastases only (P ¼ 0.002). Functional well-being was significantly higher in women without children (P ¼ 0.004). Satisfaction with experience of care was low and appeared to be predominantly in the hospital setting, with little evidence of involvement of general practitioners and palliative care services.Conclusion. Despite improvements in treatment and survival of women with metastatic breast cancer, this group reports high symptom burden and dissatisfaction with elements of their care, indicating that alternative models of service delivery should be explored. J Pain Symptom Manage 2011;-:-e-.

BackgroundWith significant developments in the management of metastatic breast cancer, the trajectory of progressive breast cancer is becoming increasingly complex with little understanding of the illness course experienced by women, or their ongoing problems and needs.AimThis study set out to systematically explore the illness trajectory of metastatic breast cancer using models from chronic illness as a framework.DesignLongitudinal mixed methods studies detailing each woman's illness trajectory were developed by triangulating of narrative interviews, medical and nursing documentation and an assessment of functional ability using the Karnofsky Scale. The Corbin and Strauss Chronic Illness Trajectory Framework was used as a theoretical framework for the study.ParticipantsTen women aged between 40 and 78 years, with metastatic breast cancer.ResultsWomen’s illness trajectories from diagnosis of metastatic disease ranged from 13 months to 5 years and 9 months. Eight of the 10 women died during the study. Chronic illness trajectory phases identified by Corbin and Strauss (pretrajectory, trajectory onset, living with progressive disease, downward phase and dying phase) were experienced by women with metastatic breast cancer. Three typical trajectories of different duration and intensity were identified. Women's lives were dominated by the physical burden of disease and treatment with little evidence of symptom control or support.ConclusionsThis is the first study to systematically explore the experience of women over time to define the metastatic breast cancer illness trajectory and provides evidence that current care provision is inadequate. Alternative models of care which address women's increasingly complex problems are needed.

background Annually, across the world a substantial number of dependent children experience the death of a parent through lifelimiting illness. Without support, this has longterm implications for children's emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying. Aim To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent's death. Design A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and openended questions were asked about the features of support provided; open-ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data. results 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z=−5.767, p<0001). Twenty-two per cent of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an underused resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers. conclusions Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents and children are needed.on July 10, 2020 by guest. Protected by copyright.

Acknowledgements:We would particularly like to thank the bisexual participants who so willingly gave their time to talk to us about their identities and relationships. This research was conducted in collaboration with the community group BiVisible Bristol and the charity OnePlusOne (http://www.oneplusone.space). It was supported by a University of the West of England (UWE) research grant (UHSS0072). The authors would like to acknowledge their appreciation of the support of these organisations. We are also grateful for the insightful comments offered by the three anonymous reviewers on an earlier version of this manuscript.2 Please note that this is the Accepted Manuscript (the final version that we worked on, prior to it being accepted for publication). The final version can be found at the following link: https://doi. AbstractMany negative portrayals of bisexuality within Western culture relate to relationships, yet only a small body of research has explored bisexual people's experiences of their bisexual identity within their partner relationships, particularly within the wider cultural context of binegativity. Twenty qualitative interviews were conducted with bisexual men, women, trans, and genderqueer/non-binary people in relationships. Participants were based in the United Kingdom and ranged from eighteen to forty years old. We conducted a thematic analysis of the data and identified two key themes: The case of the disappearing bisexual: Invisible identities and unintelligible bisexual relationships and That's not my bisexuality and not my bisexual relationship: Defending self, relationships, and partners against bisexual negativity.In the first theme we report how bisexual identity was understood by participants as largely invisible, particularly when they were in relationships, and discuss how the notion of a "bisexual relationship" was seemingly unintelligible. In the second theme, we discuss how participants engaged in identity and relationship work to defend themselves and their partners against binegativity in order to protect their bisexual identity, their partners, and their relationships. These results contribute novel findings to our understandings of how bisexual people experience and manage their identities and relationships within the wider context of binegativity. We conclude with a discussion of the importance and implications of our findings.3