Experiences of music therapy in paediatric palliative care from multiple stakeholder perspectives: A systematic review and qualitative evidence synthesis.

BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. AIM: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. DESIGN: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). DATA SOURCES: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). RESULTS: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. CONCLUSION: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes.

Safety, resource use and nutritional content of home-blended diets in children who are gastrostomy fed: findings from 'YourTube' - a prospective cohort study.

OBJECTIVE: To assess the risks, benefits and resource implications of using home-blended food in children with gastrostomy tubes compared with currently recommended formula feeds. DESIGN: This is a cohort study. Data were collected at months 0, 12 and 18 from parents and clinicians using standardised measures. SETTING: 32 sites across England: 28 National Health Service trusts and 4 children's hospices. PATIENTS: Children aged 6 months-18 years who were gastrostomy fed. MAIN OUTCOME MEASURE: The main outcome measure was the PedsQL Gastrointestinal Symptoms Scales score. Secondary outcomes included quality of life, sleep (child, parent), dietary intake, anthropometry, healthcare usage, safety outcomes and resource use. RESULTS: 180 children and families completed the baseline data collection, with 134 (74%) and 105 (58%) providing follow-up data at 12 and 18 months. There were fewer gastrointestinal (GI) symptoms at all time points in the home-blended diet group, but there was no difference in change over time within or between the groups. The nutritional intake of those on a home-blended diet had higher calories per kilogram and fibre, and both home-blended and formula-fed children have values above the dietary reference values for most micronutrients. Safety outcomes were similar between groups and over time. The total costs to the statutory sector were higher among children who were formula fed, but the costs of purchasing special equipment for home-blended food and the total time spent on childcare were higher for families with home-blended diet. CONCLUSIONS: Children who are gastrostomy fed a home-blended diet have similar safety profile, adequate nutritional intake and lower burden of GI symptoms than formula-fed children.Trial registration number ISRCTN13977361.

'YourTube' the role of different diets in gastrostomy-fed children: Baseline findings from a prospective cohort study.

AIM: To assess the risks, benefits, and resource implications of home-blended food for children with gastrostomy tubes compared with a formula diet. METHOD: This prospective cohort study of children (aged 0-18 years) collected baseline data on gastrointestinal symptoms, nutritional intake, anthropometric outcomes, parent and child quality of life, and resource use. A propensity score-weighted generalized linear mixed model was used to compare children receiving a home-blended versus formula diet. RESULTS: Baseline data were obtained for 180 children (2019-2021; 107 males, 73 females; mean age 9 years 7 months [SD 4 years 5 months]). Children receiving a home-blended diet (n = 104) had similar diagnoses and age but more lived in areas of lower deprivation and parental education was higher compared to the parents of children receiving a formula diet (n = 76). Children receiving home-blended diets had significantly better gastrointestinal scores than those receiving formula diets (B = 13.8, p < 0.001). The number of gut infections and tube blockages were similar between the two groups but with fewer stoma site infections in the group receiving home-blended food. Children receiving a home-blended diet had more fibre in their diet compared to children receiving a formula diet. INTERPRETATION: Home-blended diets should be seen as a safe option for children who are gastrostomy-fed unless clinically contraindicated. Equality of access to home-blended diets for children with gastrostomy should be assessed by local clinical teams.

Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study.

BACKGROUND: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. METHODS: Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. RESULTS: Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. CONCLUSIONS: Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.

Understanding parents' experiences of care for children with medical complexity in England: a qualitative study.

OBJECTIVES: To understand parents' experiences of receiving care for their child with medical complexity. DESIGN: Qualitative semi-structured interviews with parents of children with medical complexities across England analysed using reflexive thematic analysis. RESULTS: Twenty parents from four hospital sites in England took part in the study, a total of 17 interviews were completed, 3 joint and 14 single parent interviews. Four themes were developed: parents feel abandoned; continuity of care (made up of three subthemes); equipment barriers; and charities fill the gaps. CONCLUSIONS: The perceived quality of healthcare provided to this population was found to be inconsistent, positive examples referred to continuity of care; communication, clinical management and long-lasting relationships. However, many experienced challenges when receiving care for their children; many of these challenges have been highlighted over the past two to three decades but despite the children's needs becoming more complex, little progress appears to have been made. Parents were seen as adopting significant additional roles beyond being a parent, but they still find themselves left without support across all areas. These families require more structured support. Policy makers and commissioners need to prioritise the needs of families to enable health and social care services to provide the support required.

Consultant-led UK paediatric palliative care services: professional configuration, services, funding.

OBJECTIVES: To systematically gather information on the professional team members, services provided, funding sources and population served for all consultant-led specialised paediatric palliative care (SPPC) teams in the UK. METHODS: Two-part online survey. RESULTS: Survey 1: All 17 medical leads from hospital-based or hospice-based SPPC teams responded to the survey (100% response rate).Only six services met the NICE guidance for minimum SPPC team.All services reported providing symptom management, specialist nursing care, end-of-life planning and care, and supporting discharges and transfers to home or hospice for the child's final days-hours. Most services also provided care coordination (n=14), bereavement support (n=13), clinical psychology (n=10) and social work-welfare support (n=9). Thirteen had one or more posts partially or fully funded by a charity.Survey 2: Nine finance leads provided detailed resource/funding information, finding a range of statutory and charity funding sources. Only one of the National Health Service (NHS)-based services fully funded by the NHS. CONCLUSIONS: One-third of services met the minimum criteria of professional team as defined by NICE. Most services relied on charity funding to fund part or all of one professional post and only one NHS-based service received all its funding directly from the NHS.

Provision of care for children with medical complexity in tertiary hospitals in England: qualitative interviews with health professionals.

BACKGROUND: Due to medical and technological advancements, children with medical complexity are a growing population. Although previous research has identified models of care and experiences when caring for this population, the majority are the USA or Canadian based. Therefore, the aim was to identify models of care for children with medical complexity and barriers and facilitators to delivering high-quality care for this population from a 'free at point of care' national health service. METHOD: Qualitative semistructured interviews were conducted with hospital clinicians across England and analysed using a thematic framework approach. RESULTS: Thirty-seven clinicians from 11 hospital sites were interviewed. In 6 of the hospital sites, there were 14 services identified. Majority of services had a variety of components, some shared and some unique to the individual service. Clinicians faced barriers and facilitators when caring for this population as demonstrated across five categories. CONCLUSIONS: There is limited guidance and evidence on the most effective and efficient models for providing care for this population. It is not possible to determine what a service should look like as there is no consensus on the most appropriate model of care as shown in this study. Due to their complex needs, this population require coordination to ensure high standards of care. However, this was not always possible as clinicians faced barriers such as time constraints, silo thinking and a lack of available housing.

What does 'good' palliative care look like for children and young people? A qualitative study of parents' experiences and perspectives.

BACKGROUND: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children's palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. AIM: This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what 'good' palliative care is. DESIGN: Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry. SETTING/PARTICIPANTS: Participants were parents of children and young people (aged 0-17 years) in England, who were receiving palliative care, and parents whose child had died. RESULTS: Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children's hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life. CONCLUSIONS: Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care.

Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis.

BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. AIM: To systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child. DESIGN: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. RESULTS: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. CONCLUSIONS: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life.

End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United Kingdom [version 1; peer review: 2 approved].

Background: Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services. The current National Institute for Health and Care Excellence (NICE) guidance provides recommendations about what should be offered, but these are based on low quality evidence. The ENHANCE study aims to identify and investigate the different models of existing end-of-life care provision for infants, children, and young people in the UK, including an assessment of the outcomes and experiences for children and parents, and the cost implications to families and healthcare providers. Methods: This mixed methods study will use three linked workstreams and a cross-cutting health economics theme to examine end-of-life care models in three exemplar clinical settings: infant, children and young adult cancer services (PTCs), paediatric intensive care units (PICUs), and neonatal units (NNUs).Workstream 1 (WS1) will survey current practice in each setting and will result in an outline of the different models of care used. WS2 is a qualitative comparison of the experiences of staff, parents and patients across the different models identified. WS3 is a quantitative assessment of the outcomes, resource use and costs across the different models identified. Discussion: Results from this study will contribute to an understanding of how end-of-life care can provide the greatest benefit for children at the end of their lives. It will also allow us to understand the likely benefits of additional funding in end-of-life care in terms of patient outcomes.

Myeloma patients' experiences of a supervised physical activity programme: a qualitative study.

PURPOSE: The Myeloma: Advancing Survival Cancer Outcomes Trial (MASCOT) tested the impact of a supervised exercise programme on fatigue, clinical, and patient-reported outcomes in multiple myeloma [MM] patients. The current study explored MM patients' experiences of the programme to guide future interventions. METHODS: Purposive sampling was used to recruit stable MM patients participating in MASCOT. Semi-structured, face-to-face interviews were conducted, transcribed verbatim, and analysed using thematic analysis. RESULTS: Six themes were identified. Key drivers for participation in MASCOT were "Altruism and extended cancer care"; participants wanted to give something back and assist in improving post-treatment care for MM patients, especially as after treatment "Barriers to being physically active" were a fear of damage and lack of health professional guidance. "Influences fostering change within the intervention" included physiotherapy supervision and tailored exercises, which gave participants confidence to push themselves in a safe environment and broke down misconceptions about their body. "Social support", from both family and peers in the programme, promoted motivation and adherence. Participants expressed concerns about "Maintaining things going forward" but had identified mechanisms to aid continuation. "Physical and mental benefits" of the programme were highlighted; participants were able to do things they couldn't before and described feeling free from the constraints of MM. CONCLUSIONS: A post-treatment exercise intervention for MM patients was a positive experience, which enhanced participants' physical and psychological wellbeing. Tailored gym and home-based exercises, a specialist cancer physiotherapist, and sustained support were perceived to be important for success. IMPLICATIONS FOR CANCER SURVIVORS: Exercise support for MM patients, ideally with physiotherapist supervision, should be incorporated into survivorship care to qualitatively improve patients' quality of life, self-efficacy, and mental wellbeing.

'It was like an airbag, it cushioned the blow': A multi-site qualitative study of bereaved parents' experiences of using cooling facilities.

BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. cooled 'bedrooms'; cooling blankets/mattresses) to slow deterioration. AIM: To explore parents' experiences of using cooling facilities and beliefs about how it shaped experiences of the very early days of bereavement, and on-going grieving processes. METHODS: Multi-site study involving in-depth interviews with parents bereaved in the previous 3 years. Grief theories informed data analysis, which employed narrative and thematic approaches. Eight hospices supported recruitment. RESULTS: Twenty-two mothers and eight fathers were recruited, representing 25% of families approached. Duration of use of a cooling facility varied, as did the amount of time spent with the child. All parents treasured this period, valuing the way it eased separation from their child and gave some control over when this happened. They believed all bereaved parents should have the opportunity to use a cooling facility. Using a cooling facility supported parents' engagement with grief tasks including acceptance of loss, processing emotional pain and facing changes to their lives brought about by their child's death. Memories and mementoes created during this period served to support on-going connections with the child. Parents who used a cooling facility at a hospice reported benefits of the setting itself. CONCLUSIONS: As well as easing the very early days of loss, use of cooling facilities may influence longer-term bereavement outcomes.

'Cold bedrooms' and other cooling facilities in UK children's hospices, how they are used and why they are offered: A mixed methods study.

BACKGROUND: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK children's hospices have a tradition of using 'cooling facilities' (cold bedrooms, cooled blanket/mattress) to extend this period of time by slowing deterioration of the body. AIMS: To describe: (1) type and use of cooling facilities in UK children's hospices, policies and practices regarding their use, and any changes over time. (2) Director of care's views on the purpose of cooling facilities and the rationale for hospice-specific practices. METHODS: An explanatory mixed-methods design consisting two phases: a crosssectional survey of directors of care of UK children's hospices (n = 52) followed by semi-structured telephone interviews with a sub-sample of respondents. Survey data were analysed using descriptive statistics and interview data using directed content analysis. RESULTS: 41/52 hospices completed the survey and 13 directors of care were interviewed. All hospices had cooling facilities. Some offered use of portable cooling facilities at home, though take-up appears low. Hospices differed in approaches to managing care and duration of use. Views on whether parents should observe deterioration informed the latter. Directors of care believed they provide families with time to say 'goodbye' and process their loss. Challenges for staff were reported.

Patient and professional experiences of palliative care referral discussions from cancer services: A qualitative interview study.

OBJECTIVES: The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. METHODS: Semi-structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. RESULTS: Twenty-four patients and eight HCPs participated. Two overarching themes and five sub-themes emerged: Theme one-referral process: timing and triggers, responsibility. Theme two-engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. CONCLUSION: There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process.

Using information and communication technologies to improve the management of pain from advanced cancer in the community: Qualitative study of the experience of implementation for patients and health professionals in a trial.

In cancer care, there are emerging information and communication technology systems being developed, enabling real-time information sharing between patients and health professionals. This study explored health professionals' and patients' perceptions of their engagement with an information and communication technology system for pain management to understand the mechanisms that could support implementation into routine palliative care practice. This was a qualitative study, embedded within a randomised control trial, using semi-structured face-to-face interviews. Data were analysed using thematic analysis. The role of health professionals was a key component to patient engagement with the information and communication technology system. Where patients engaged with the information and communication technology system, both patients and health professionals reported benefits to system use in addition to usual care. Implementation issues were identified that can be used to guide future system development to support pain management in the context of routine clinical care in palliative care services. Where interventions are dependent on multiple providers, collaborative working and consideration of the context within which they are set are needed.

Multidisciplinary Software Design for the Routine Monitoring and Assessment of Pain in Palliative Care Services: The Development of PainCheck.

PURPOSE: The use of health information technology (HIT) to support patient and health professional communication is emerging as a core component of modern cancer care. Approaches to HIT development for cancer care are often underreported, despite their implementation in complex, multidisciplinary environments, typically supporting patients with multifaceted needs. We describe the development and evaluation of an e-health tool for pain management in patients with advanced cancer, arising from collaboration between health researchers and a commercial software development company. METHODS: We adopted a research-led development process, involving patients with advanced cancer and their health professionals, focusing on use within real clinical settings. A software development approach (disciplined agile delivery) was combined with health science research methods (ie, diary studies, face-to-face interviews, questionnaires, prototyping, think aloud, process reviews, and pilots). Three software iterations were managed through three disciplined agile delivery phases to develop PainCheck and prepare it for use in a clinical trial. RESULTS: Findings from development phases (inception, elaboration, and construction) informed the design and implementation of PainCheck. During the transition phase, where PainCheck was evaluated in a randomized clinical trial, there was variation in the extent of engagement by patients and health professionals. Prior personal experience and confidence with HIT led to a gatekeeping effect among health professionals, who were reluctant to introduce PainCheck to patients. Patients who did use PainCheck seemed to benefit, and no usability issues were reported. CONCLUSION: Health science research methods seemed to help in the development of PainCheck, although a more rigorous application of implementation science methodologies might help to elucidate further the barriers and facilitators to adoption and inform an evidence-based plan for future implementation.

Primary palliative care team perspectives on coordinating and managing people with advanced cancer in the community: a qualitative study.

BACKGROUND: Primary health care teams are key to the delivery of care for patients with advanced cancer during the last year of life. The Gold Standards Framework is proposed as a mechanism for coordinating and guiding identification, assessment, and support. There are still considerable variations in practice despite its introduction. The aim of this qualitative study is to improve understanding of variations in practice through exploring the perspectives and experiences of members of primary health care teams involved in the care of patients with advanced cancer. METHODS: Qualitative, semi-structured interviews, focus groups, and non-participatory observations involving 67 members of primary health care teams providing palliative care. Data were analysed using a grounded theory approach. RESULTS: We identified distinct differences in the drivers and barriers of community advanced cancer care coordination, which relate to identification and management, and access to effective pain management, and go some way to understanding variations in practice. These include proactive identification processes, time and resource pressures, unclear roles and responsibilities, poor multidisciplinary working, and inflexible models for referral and prescribing. These provide valuable insight into how professionals work together and independently within an infrastructure that can both support and hinder the provision of effective community palliative care. CONCLUSIONS: Whilst the GSF is a guide for good practice, alone it is not a mechanism for change. Rather it provides a framework for describing quality of practice that was already occurring. Consequently, there will continue to be variations in practice.

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

INTRODUCTION: For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. METHODS AND ANALYSIS: This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. ETHICS AND DISSEMINATION: Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups.

Uptake of breast cancer preventive therapy in the UK: results from a multicentre prospective survey and qualitative interviews.

PURPOSE: Uptake of preventive therapy for women at increased breast cancer risk in England is unknown following the introduction of UK clinical guidelines in 2013. Preventive therapy could create socioeconomic inequalities in cancer incidence if it is more readily accepted by particular socio-demographic groups. In this multicentre study, we investigated uptake of tamoxifen and evaluated socio-demographic and clinical factors associated with initiation. We explored women's experiences of treatment decision-making using qualitative interview data. METHODS: Between September 2015 and December 2016, women (n = 732) attending an appointment at one of 20 centres in England to discuss breast cancer risk were approached to complete a survey containing socio-demographic details and nulliparity. Of the baseline survey respondents (n = 408/732, 55.7% response rate), self-reported uptake of tamoxifen at 3-month follow-up was reported in 258 (63.2%). Sixteen women participated in semi-structured interviews. RESULTS: One in seven (38/258 = 14.7%) women initiated tamoxifen. Women who had children were more likely to report use of tamoxifen than those without children (OR = 5.26; 95%CI: 1.13-24.49, p = 0.035). Interview data suggested that women weigh up risks and benefits of tamoxifen within the context of familial commitments, with exposure to significant other's beliefs and experiences of cancer and medication a basis for their decision. CONCLUSIONS: Uptake of tamoxifen is low in clinical practice. There were no socio-demographic differences in uptake, suggesting that the introduction of breast cancer preventive therapy is unlikely to create socioeconomic inequalities in cancer incidence. Women's decision-making was influenced by familial priorities, particularly having children.

Improving the management of pain from advanced cancer in the community: study protocol for a pragmatic multicentre randomised controlled trial.

INTRODUCTION: For patients with advanced cancer, research shows that pain is frequent, burdensome and undertreated. Evidence-based approaches to support cancer pain management have been developed but have not been implemented within the context of the UK National Health Service. This protocol is for a pragmatic multicentre randomised controlled trial (RCT) to assess feasibility, acceptability, effectiveness and cost-effectiveness for a multicomponent intervention for pain management in patients with advanced cancer. METHODS AND ANALYSIS: This trial will assess the feasibility of implementation and uptake of evidence-based interventions, developed and piloted as part of the Improving the Management of Pain from Advanced Cancer in the Community Programme grant, into routine clinical practice and determine whether there are potential differences with respect to patient-rated pain, patient pain knowledge and experience, healthcare use, quality of life and cost-effectiveness. 160 patients will receive either the intervention (usual care plus supported self-management) delivered within the oncology clinic and palliative care services by locally assigned community palliative care nurses, consisting of a self-management educational intervention and eHealth intervention for routine pain assessment and monitoring; or usual care. The primary outcomes are to assess implementation and uptake of the interventions, and differences in terms of pain severity. Secondary outcomes include pain interference, participant pain knowledge and experience, and cost-effectiveness. Outcome assessment will be blinded and patient-reported outcome measures collected via post at 6 and 12 weeks following randomisation. ETHICS AND DISSEMINATION: This RCT has the potential to significantly influence National Health Service delivery to community-based patients with pain from advanced cancer. We aim to provide definitive evidence of whether two simple interventions delivered by community palliative care nurse in palliative care that support-self-management are clinically effective and cost-effective additions to standard community palliative care. TRIAL REGISTRATION NUMBER: ISRCTN18281271; Pre-results.