Establishing a research partnership to investigate functional loss and rehabilitation towards the end of life.

Background: Functional loss, the inability to perform necessary or desired tasks, is a common consequence of life-limiting illnesses and associated symptoms (pain, fatigue, breathlessness, etc.) and causes suffering for patients and families. Rehabilitation, a set of interventions designed to address functional loss, is recognised as essential within palliative care, as it can improve quality of life and reduce care costs. However, not everyone has equal access to rehabilitation. Despite limited life expectancy or uncertain ability to benefit from interventions, palliative rehabilitation services are often absent. This is partly due to a lack of high-quality research around optimal models of rehabilitation. Research in this area is methodologically challenging and requires multidisciplinary and cross-speciality collaboration. Aim and objectives: We aimed to establish and grow a United Kingdom research partnership across diverse areas, commencing with partners from Edinburgh, East Anglia, Lancashire, Leeds, London and Nottingham, around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The objectives were to (1) develop a multidisciplinary, cross-speciality research partnership, (2) generate high-priority unanswered research questions with stakeholders, (3) co-design and submit high-quality competitive research proposals, including (4) sharing topic and methodological expertise, and (5) to build capacity and capability to deliver nationally generalisable studies. Activities: The partnership was established with professionals from across England and Scotland with complementary areas of expertise including complex palliative and geriatric research, physiotherapy, nursing, palliative medicine and psychology. Research questions were generated through a modified version of the Child Health and Nutrition Research Initiative, which allowed for the collation and refinement of research questions relating to functional loss and rehabilitation towards the end of life. Partnership members were supported through a series of workshops to transform research ideas into proposals for submission to stage one calls by the National Institute for Health and Care Research. The partnership not only supported students, clinicians and public members with training opportunities but also supported clinicians in securing protected time from clinical duties to allow them to focus on developing local research initiatives. Reflections: Through our partnership we established a network that offered researchers, clinicians, students and public members the chance to develop novel skills and explore opportunities for personal and professional development around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The partnership was crucial to foster collaboration and facilitate exchange of ideas, knowledge and experiences to build joint research study proposals. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) programme as award number NIHR135171. A plain language summary of this article is available on the NIHR Journals Library website https://doi.org/10.3310/PTHC7598.

'Functional loss' describes a person becoming unable to do the everyday activities they would like or need to do. Life-limiting illnesses and their symptoms can often lead to functional loss: a common source of suffering for patients and their families. Rehabilitation aims to support a person to carry out everyday activities that have been affected by illness. This should be an important part of providing good palliative care. However, in practice, not everyone has equal access to rehabilitation and there is a lack of high-quality research in this area. The Palliative Care Rehabilitation Partnership was created to begin to address these challenges. This partnership completed activities in five key areas: Establishing the partnership ­ Brought together experts from different fields, like palliative care, care for older people and research, to improve rehabilitation for people with life-limiting illnesses. Generating research questions ­ Collected and ranked research questions about functional loss and rehabilitation from various stakeholders, including patients, to identify key research areas. Developing research proposals ­ Helped, through workshops, turn these research questions into detailed proposals for funding. This involved refining ideas, discussing how best to conduct the studies and getting feedback. Building capacity and capability ­ Provided training opportunities for its members, including clinicians, researchers and patients, to improve their research and rehabilitation skills. It also offered mentorship to people with dual roles as clinicians and researchers. Service mapping ­ Improved our understanding of services for functional loss and rehabilitation across different healthcare settings. The Palliative Care Rehabilitation Partnership has made gains in addressing the complex issues of functional loss and rehabilitation in people with life-limiting illnesses. The partnership has supported the development of at least three new research proposals that will be used to apply for future funding.

Narrative review: what constitutes contemporary, high-quality end-of-life care and can lessons be learned from medieval history?

BACKGROUND AND OBJECTIVE: In modern Britain, palliative and end-of-life care is governed by quality standards and guidance, which should consider spiritual and psychological needs. However, there are significant gaps in provision of services which was highlighted during the coronavirus disease 2019 (COVID-19) pandemic where many individuals and families suffered profound spiritual and existential distress. Significant gaps remain in the provision of services to support patients with spiritual and psychological needs which can affect the management of physical symptoms. During the medieval period in Western Europe, it was important to prepare well for death throughout life. It has been suggested that lessons may be learned from medieval preparations for death which might benefit those approaching end-of-life in contemporary society. It is therefore timely to consider medieval attitudes to death and reflect on how these might inform modern end-of-life care. The objective of this review is to synthesise literature addressing modern end-of-life care in the UK and contrast this with literature on preparations for death during the medieval period in Western Europe. Our aim is to determine whether there is wisdom to be gained from history which could inform our approaches to end-of-life care today. METHODS: Using online databases and broad keyword searches along with experts in the field of medieval history, we identified literature and translations of texts with a focus on preparations for death during both periods. These were narratively synthesised and discussed. KEY CONTENT AND FINDINGS: A key finding is that the medieval attitude to death was as an integral part of life, whereas in modern society death is not usually considered until the situation arises. The review highlights a need for a better understanding of the individuality of spiritual and existential needs during end-of-life care in modern society, which will vary according to individual choice, culture, societal group, religion, and belief. CONCLUSIONS: The lessons we can learn from our medieval counterparts include the need for lifelong and individual preparations for the end of life, with emphasis on spiritual needs. Alongside palliative interventions, we need to take time to appreciate what gives individuals spiritual support and provide the resources to facilitate this.

Staff well-being in UK children's hospices: a national survey.

OBJECTIVES: Poor psychological well-being among healthcare workers can have numerous negative impacts, but evidence about levels of burnout in children's hospice care staff is limited. This study aimed to determine the prevalence of burnout and to explore the association between staff characteristics and support mechanisms with burnout among children's hospice care staff in the UK. METHODS: Two national online surveys collecting data on hospice care staff psychological well-being and hospice organisational characteristics. All children's hospices in the UK were invited.Thirty-one hospices (out of 52) responded to the hospice survey and 583 staff responded to the staff survey. Data collection took place between May and December 2020 and measures included the Copenhagen Burnout Inventory, Work Engagement and the Health and Safety Executive Management Standards Indicator Tool. RESULTS: Burnout prevalence was 11% and mean burnout score was 32.5 (SD: 13.1). Burnout levels were independent of working arrangements (eg, working from home or at the hospice) during the COVID-19 pandemic. Hospices performed well in most management standards, but poorly on the 'Control' domain. The average Work Engagement score for staff was 7.5 (SD: 1.5). CONCLUSIONS: Burnout levels for staff in children's hospices in the UK were lower than in other healthcare settings, with this comparing to 17.3% among palliative care staff generally. Overall, hospices performed well in management standards and there was no indication of urgent action needed. Work Engagement in our sample was higher compared with other National Health Service workers during the COVID-19 pandemic.

Psychological well-being of hospice staff: systematic review.

BACKGROUND: Poor psychological well-being among healthcare staff has implications for staff sickness and absence rates, and impacts on the quality, cost and safety of patient care. Although numerous studies have explored the well-being of hospice staff, study findings vary and the evidence has not yet been reviewed and synthesised. Using job demands-resources (JD-R) theory, this review aimed to investigate what factors are associated with the well-being of hospice staff. METHODS: We searched MEDLINE, CINAHL and PsycINFO for peer-reviewed quantitative, qualitative or mixed-methods studies focused on understanding what contributes to the well-being of hospice staff who provide care to patients (adults and children). The date of the last search was 11 March 2022. Studies were published from 2000 onwards in the English language and conducted in Organisation for Economic Co-operation and Development countries. Study quality was assessed using the Mixed Methods Appraisal Tool. Data synthesis was conducted using a result-based convergent design, which involved an iterative, thematic approach of collating data into distinct factors and mapping these to the JD-R theory. RESULTS: A total of 4016 unique records were screened by title and abstract, 115 full-text articles were retrieved and reviewed and 27 articles describing 23 studies were included in the review. The majority of the evidence came from studies of staff working with adult patients. Twenty-seven individual factors were identified in the included studies. There is a strong and moderate evidence that 21 of the 27 identified factors can influence hospice staff well-being. These 21 factors can be grouped into three categories: (1) those that are specific to the hospice environment and role, such as the complexity and diversity of the hospice role; (2) those that have been found to be associated with well-being in other similar settings, such as relationships with patients and their families; and (3) those that affect workers regardless of their role and work environment, that is, that are not unique to working in a healthcare role, such as workload and working relationships. There was strong evidence that neither staff demographic characteristics nor education level can influence well-being. DISCUSSION: The factors identified in this review highlight the importance of assessing both positive and negative domains of experience to determine coping interventions. Hospice organisations should aim to offer a wide range of interventions to ensure their staff have access to something that works for them. These should involve continuing or commencing initiatives to protect the factors that make hospices good environments in which to work, as well as recognising that hospice staff are also subject to many of the same factors that affect psychological well-being in all work environments. Only two studies included in the review were set in children's hospices, suggesting that more research is needed in these settings. PROSPERO REGISTRATION NUMBER: CRD42019136721 (Deviations from the protocol are noted in Table 8, Supplementary material).

Acceptability of aspirin for cancer preventive therapy: a survey and qualitative study exploring the views of the UK general population.

OBJECTIVES: Aspirin could be offered for colorectal cancer prevention for the UK general population. To ensure the views of the general population are considered in future guidance, we explored public perceptions of aspirin for preventive therapy. DESIGN: We conducted an online survey to investigate aspirin use, and awareness of aspirin for cancer prevention among the UK general population. We conducted semistructured interviews with a subsample of survey respondents to explore participants' acceptability towards aspirin for cancer preventive therapy. We analysed the interview data using reflexive thematic analysis and mapped the themes onto the Theoretical Domains Framework, and the Necessity and Concerns Framework. SETTING: Online survey and remote interviews. PARTICIPANTS: We recruited 400 UK respondents aged 50-70 years through a market research company to the survey. We purposefully sampled, recruited and interviewed 20 survey respondents. RESULTS: In the survey, 19.0% (76/400) of respondents were aware that aspirin can be used to prevent cancer. Among those who had previously taken aspirin, 1.9% (4/216) had taken it for cancer prevention. The interviews generated three themes: (1) perceived necessity of aspirin; (2) concerns about side effects; and (3) preferred information sources. Participants with a personal or family history of cancer were more likely to perceive aspirin as necessary for cancer prevention. Concerns about taking aspirin at higher doses and its side effects, such as gastrointestinal bleeding, were common. Many described wanting guidance and advice on aspirin to be communicated from sources perceived as trustworthy, such as healthcare professionals. CONCLUSIONS: Among the general population, those with a personal or family history of cancer may be more receptive towards taking aspirin for preventive therapy. Future policies and campaigns recommending aspirin may be of particular interest to these groups. Multiple considerations about the benefits and risks of aspirin highlight the need to support informed decisions on the medication.

Work-related resources and demands predicting the psychological well-being of staff in children's hospices.

OBJECTIVES: This study assessed the work-related resources and demands experienced by children's hospice staff to help identify staff support systems and organizational practices that offer the most potential to prevent staff burnout and enhance well-being at work. METHODS: The relationships between individual and organizational characteristics, work-related resources and demands, and burnout and work engagement outcomes experienced by children's hospice staff were explored using two surveys: the Children's Hospice Staff survey, completed by UK children's hospice staff, and the Children's Hospice Organisation and Management survey, completed by the Heads of Care. We used structural equation modeling to assess the relationships between the variables derived from the survey measures and to test a model underpinned by the Job Demands-Resource (JD-R) theory. RESULTS: There were 583 staff responses from 32 hospices, and 414 participants provided valid data for burnout and work engagement outcome measures. Most participants were females (95.4%), aged 51-65 years old (31.3%), and had more than 15 years of experience in life-limiting conditions (29.7%). The average score for burnout was 32.5 (SD: 13.1), and the average score for work engagement was 7.5 (SD: 1.5). The structural model validity showed good fit. Demands significantly predicted burnout (b = 4.65, p ≤ 0.001), and resources predicted work engagement (b = 3.09, p ≤ 0.001). The interaction between resources and demands only predicted work engagement (b = -0.31, p = 0.115). Burnout did not predict work engagement (b = -0.09, p = 0.194). SIGNIFICANCE OF RESULTS: The results partly supported the JD-R model, with a clear association between resources and work engagement, even when the demands were considered. Demands were only directly associated with burnout. The findings also identified a set of the most relevant aspects related to resources and demands, which can be used to assess and improve staff psychological well-being in children's hospices in the UK.

Supporting Pain Self-Management in Patients With Cancer: App Development Based on a Theoretical and Evidence-Driven Approach.

BACKGROUND: To inform the development of an intervention, it is essential to have a well-developed theoretical understanding of how an intervention causes change, as stated in the UK Medical Research Council guidelines for developing complex interventions. Theoretical foundations are often ignored in the development of mobile health apps intended to support pain self-management for patients with cancer. OBJECTIVE: This study aims to systematically set a theory- and evidence-driven design for a pain self-management app and specify the app's active features. METHODS: The Behavior Change Wheel (BCW) framework, a step-by-step theoretical approach to the development of interventions, was adopted to achieve the aim of this study. This started by understanding and identifying sources of behavior that could be targeted to support better pain management. Ultimately, the application of the BCW framework guided the identification of the active contents of the app, which were characterized using the Behavior Change Technique Taxonomy version 1. RESULTS: The theoretical analysis revealed that patients may have deficits in their capability, opportunity, and motivation that prevent them from performing pain self-management. The app needs to use education, persuasion, training, and enablement intervention functions because, based on the analysis, they were found the most likely to address the specified factors. Eighteen behavior change techniques were selected to describe precisely how the intervention functions can be presented to induce the desired change regarding the intervention context. In other words, they were selected to form the active contents of the app, potentially reducing barriers and serving to support patients in the self-management of pain while using the app. CONCLUSIONS: This study fully reports the design and development of a pain self-management app underpinned by theory and evidence and intended for patients with cancer. It provides a model example of the BCW framework application for health app development. The work presented in this study is the first systematic theory- and evidence-driven design for a pain app for patients with cancer. This systematic approach can support clarity in evaluating the intervention's underlying mechanisms and support future replication.

A new scale assessing the stressors and rewards of children's hospice work.

BACKGROUND: There is a workforce shortage in the children's hospice sector, but there has been little research on the specific challenges of working in this setting and on how these challenges might be alleviated. To identify appropriate interventions to improve staff wellbeing, the drivers of wellbeing in children's hospices need to be known and measured. This paper reports on the development of two measures, one for work-related rewards and one for work-related stressors, for use in children's hospice care teams. METHODS: A mixed-methods, four-stage study; the first three phases focused on the development of the scales, and the last stage focused on the validation of the scales. Participants of all stages were children's hospice care team staff members in the UK. Stage 1: survey assessing the relevance and comprehensiveness of the original scale items (N = 60); Stages 2 (focus groups; N = 16) and 3 (cognitive interviews; N = 14) to assess content validity; Stage 4: UK-wide survey (N = 414) to validate the final version of the new, children's hospice-specific scales using Rasch Analysis (RA) and Confirmatory Factor Analysis (CFA). RESULTS: Due to poor fitting indices shown in the results from the RA, five items (out of 36) were removed from the new rewards scale used in the UK-wide survey and 20 (out of 62) were removed from the new stressors scale. CFA also supported the removal of the items and showed a one-factor structure for the rewards scale and a three-factor structure for the stressors scale were adequate-the sub-scales for the stressors scale related to caring for an ill or dying child ("Child" sub-scale), working with parents and families ("Parent" sub-scale), and stressors related to organisational factors, such as team conflict and workload ("Organisation" sub-scale). CONCLUSIONS: Both of the new scales showed good psychometric properties and can be useful in clinical settings and research to assess the perceived intensity of the work-related rewards and stressors for children's hospice staff.

Non-pharmacological interventions to manage psychological distress in patients living with cancer: a systematic review.

BACKGROUND: Psychological distress is common in patients with cancer; interfering with physical and psychological wellbeing, and hindering management of physical symptoms. Our aim was to systematically review published evidence on non-pharmacological interventions for cancer-related psychological distress, at all stages of the disease. METHODS: We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The review was registered on PROSPERO (CRD42022311729). Searches were made using eight online databases to identify studies meeting our inclusion criteria. Data were collected on outcome measures, modes of delivery, resources and evidence of efficacy. A meta-analysis was planned if data allowed. Quality was assessed using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Fifty-nine studies with 17,628 participants were included. One third of studies included mindfulness, talking or group therapies. Half of all studies reported statistically significant improvements in distress. Statistically significant intervention effects on distress were most prevalent for mindfulness techniques. Four of these mindfulness studies had moderate effect sizes (d = -0.71[95% CI: -1.04, -0.37] p < 0.001) (d = -0.60 [95% CI: -3.44, -0.89] p < 0.001) (d = -0.77 [CI: -0.146, -1.954] p < 0.01) (d = -0.69 [CI: -0.18, -1.19] p = 0.008) and one had a large effect size (d = -1.03 [95% CI: -1.51, -0.54] p < 0.001). Heterogeneity of studies precluded meta-analysis. Study quality was variable and some had a high risk of bias. CONCLUSIONS: The majority of studies using a mindfulness intervention in this review are efficacious at alleviating distress. Mindfulness-including brief, self-administered interventions-merits further investigation, using adequately powered, high-quality studies. SYSTEMATIC REVIEW REGISTRATION: This systematic review is registered on PROSPERO, number CRD42022311729.

Characteristics of good home-based end-of-life care: analysis of 5-year data from a nationwide mortality follow-back survey in England.

BACKGROUND: Recently, there has been an emphasis on providing good-quality end-of-life care; however, little is known about it and its determinants for patients living at home. AIM: To determine what characterises good-quality end-of-life care for patients living at home. DESIGN AND SETTING: An observational study using 5-year data from the National Survey of Bereaved People (Views of Informal Carers - Evaluation of Services [VOICES]) in England. METHOD: Analysis was based on data for 63 598 decedents, who were cared for at home in the last 3 months of life. Data were drawn from 110 311 completed mortality follow-back surveys of a stratified sample of 246 763 deaths registered in England between 2011 and 2015. Logistic regression analyses were used to identify independent variables associated with overall quality of end-of-life care and other indicators of end-of-life care quality. RESULTS: Patients who received good continuity of primary care (adjusted odds ratio [AOR] 2.03; 95% confidence interval [CI] = 2.01 to 2.06) and palliative care support (AOR 1.86; 95% CI = 1.84 to 1.89) experienced better overall quality of end-of-life care than those who did not, as perceived by relatives. Decedents who died from cancer (AOR 1.05; 95% CI = 1.03 to 1.06) or outside of hospital were more likely to receive good end-of-life care, as perceived by relatives. Being older, female (AOR 1.16; 95% CI = 1.15 to 1.17), from areas with least socioeconomic deprivation, and White (AOR 1.09; 95% CI = 1.06 to 1.12) were associated with better overall end-of-life care, as perceived by relatives. CONCLUSION: Better quality of end-of-life care was associated with good continuity of primary care, specialist palliative care support, and death outside of hospital. Disparities still exist for those from minority ethnic groups and those living in areas of socioeconomic deprivation. Future commissioning and initiatives must consider these variables to provide a more-equitable service.

GPs' willingness to prescribe aspirin for cancer preventive therapy in Lynch syndrome: a factorial randomised trial investigating factors influencing decisions.

BACKGROUND: The National Institute for Health and Care Excellence (NICE) 2020 guidelines recommends aspirin for colorectal cancer prevention for people with Lynch syndrome. Strategies to change practice should be informed by understanding the factors influencing prescribing. AIM: To investigate the optimal type and level of information to communicate with GPs to increase willingness to prescribe aspirin. DESIGN AND SETTING: GPs in England and Wales (n = 672) were recruited to participate in an online survey with a 23 factorial design. GPs were randomised to one of eight vignettes describing a hypothetical patient with Lynch syndrome recommended to take aspirin by a clinical geneticist. METHOD: Across the vignettes, the presence or absence of three types of information was manipulated: 1) existence of NICE guidance; 2) results from the CAPP2 trial; 3) information comparing risks/benefits of aspirin. The main effects and all interactions on the primary (willingness to prescribe) and secondary outcomes (comfort discussing aspirin) were estimated. RESULTS: There were no statistically significant main effects or interactions of the three information components on willingness to prescribe aspirin or comfort discussing harms and benefits. In total, 80.4% (540/672) of GPs were willing to prescribe, with 19.7% (132/672) unwilling. GPs with prior awareness of aspirin for preventive therapy were more comfortable discussing the medication than those unaware (P = 0.031). CONCLUSION: It is unlikely that providing information on clinical guidance, trial results, and information comparing benefits and harms will increase aspirin prescribing for Lynch syndrome in primary care. Alternative multilevel strategies to support informed prescribing may be warranted.

Barriers and facilitators to using aspirin for preventive therapy: a qualitative study exploring the views and experiences of people with Lynch syndrome and healthcare providers.

BACKGROUND: The National Institute for Health and Care Excellence (NG151) recommends considering daily aspirin for people with Lynch syndrome to reduce colorectal cancer risk. However, deciding whether to initiate aspirin could be a complex decision for patients and their healthcare providers, as both the potential benefits and harms need to be considered. METHODS: We conducted semi-structured interviews to explore the barriers and facilitators to using aspirin for preventive therapy. We recruited 15 people with Lynch syndrome, and 23 healthcare providers across multiple professions in primary, and specialist care (e.g. clinical genetics) in the United Kingdom. Interview schedules were informed by the Theoretical Domains Framework. RESULTS: There were three themes: 1) Considering potential harms and benefits; 2) Healthcare pathway; 3) Patients' level of interest in aspirin. All healthcare providers, across primary and specialist care, viewed general practitioners (GPs) as being responsible for prescribing and overseeing the use of aspirin. However, GPs were unfamiliar with aspirin for preventive therapy, and concerned about prescribing at higher doses (300-600 mg). To support decision-making, GPs wanted clarification from specialist clinicians on the evidence and dose to prescribe. Not all participants with Lynch syndrome received information on aspirin from their healthcare provider, and several were unsure who to discuss aspirin with. GPs were more inclined to prescribe aspirin for patients with expressed preferences for the medication, however several patients were uncertain and wanted further guidance. CONCLUSIONS: Coordinated and multilevel strategies are needed, addressing the needs of both GPs and people with Lynch syndrome, to ensure consistent implementation of national guidance on aspirin for preventive therapy.

Aspirin use for cancer prevention: A systematic review of public, patient and healthcare provider attitudes and adherence behaviours.

We undertook a systematic review to synthesise the data on attitudes and behaviour towards the use of aspirin for cancer prevention, and healthcare providers' attitudes towards implementing aspirin in practice. Searches were carried out across 12 databases (e.g. MEDLINE, EMBASE). We used the Mixed Methods Appraisal Tool to evaluate study quality, and conducted a narrative synthesis of the data. The review was pre-registered (PROSPERO: CRD42018093453). Thirty-eight studies were identified. Uptake and adherence data were all from trials. Trials recruited healthy participants, those at higher risk of cancer, and those with cancer. Four studies reported moderate to high (40.9-77.7%) uptake to an aspirin trial among people who were eligible. Most trials (18/22) reported high day-to-day adherence (≥80%). Three trials observed no association between gender and adherence. One trial found no association between adherence and colorectal cancer risk. Three studies reported moderate to high (43.6-76.0%) hypothetical willingness to use aspirin. Two studies found that a high proportion of healthcare providers (72.0-76.0%) perceived aspirin to be a suitable cancer prevention option. No qualitative studies were identified. The likelihood that eligible users of aspirin would participate in a trial evaluating the use of aspirin for preventive therapy was moderate to high. Among participants in a trial, day-to-day adherence was high. Further research is needed to identify uptake and adherence rates in routine care, the factors affecting aspirin use, and the barriers to implementing aspirin into clinical care.

Breast cancer worry in higher-risk women offered preventive therapy: a UK multicentre prospective study.

PURPOSE: Women's worry about developing breast cancer may influence their decision to use preventive therapy. However, the direction of this relationship has been questioned. We prospectively investigated the relationship between breast cancer worry and uptake of preventive therapy. The socio-demographic and clinical factors associated with high breast cancer worry were also investigated. METHODS: Women at increased risk of developing breast cancer were recruited from clinics across England (n = 408). Participants completed a survey on their breast cancer worry, socio-demographic and clinical factors. Uptake of tamoxifen was recorded at 3 months (n = 258 women, 63.2%). Both primary and sensitivity analyses were conducted using different classifications of low, medium and high worry. RESULTS: 39.5% of respondents reported medium breast cancer worry at baseline and 21.2% reported high worry. Ethnic minority women were more likely to report high worry than white women (OR = 3.02, 95%CI 1.02, 8.91, p = 0.046). Women educated below degree level were more likely to report high worry than those with higher education (OR = 2.29, 95%CI 1.28, 4.09, p = 0.005). No statistically significant association was observed between worry and uptake. In the primary analysis, fewer respondents with medium worry at baseline initiated tamoxifen (low worry = 15.5%, medium = 13.5%, high = 15.7%). In the sensitivity analysis, participants with medium worry reported the highest uptake of tamoxifen (19.7%). CONCLUSIONS: No association was observed between worry and uptake, although the relationship was affected by the categorisation of worry. Standardised reporting of the classification of worry is warranted to allow transparent comparisons across cohorts.

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.

Kidney disease pathways, options and decisions: an environmental scan of international patient decision aids.

BACKGROUND: Conservative management is recognized as an acceptable treatment for people with worsening chronic kidney disease; however, patients consistently report they lack understanding about their changing disease state and feel unsupported in making shared decisions about future treatment. The purpose of this review was to critically evaluate patient decision aids (PtDAs) developed to support patient-professional shared decision-making between dialysis and conservative management treatment pathways. METHODS: We performed a systematic review of resources accessible in English using environmental scan methods. Data sources included online databases of research publications, repositories for clinical guidelines, research projects and PtDAs, international PtDA expert lists and reference lists from relevant publications. The resource selection was from 56 screened records; 17 PtDAs were included. A data extraction sheet was applied to all eligible resources, eliciting resource characteristics, decision architecture to boost/bias thinking, indicators of quality such as International Standards for Patient Decision Aids Standards checklist and engagement with health services. RESULTS: PtDAs were developed in five countries; eleven were publically available via the Internet. Treatment options described were dialysis (n = 17), conservative management (n = 9) and transplant (n = 5). Eight resources signposted conservative management as an option rather than an active choice. Ten different labels across 14 resources were used to name 'conservative management'. The readability of the resources was good. Six publications detail decision aid development and/or evaluation research. Using PtDAs improved treatment decision-making by patients. Only resources identified as PtDAs and available in English were included. CONCLUSIONS: PtDAs are used by some services to support patients choosing between dialysis options or end-of-life options. PtDAs developed to proactively support people making informed decisions between conservative management and dialysis treatments are likely to enable services to meet current best practice.

Identification of patients with potential palliative care needs: A systematic review of screening tools in primary care.

BACKGROUND: Despite increasing evidence of the benefits of early access to palliative care, many patients do not receive palliative care in a timely manner. A systematic approach in primary care can facilitate earlier identification of patients with potential palliative care needs and prompt further assessment. AIM: To identify existing screening tools for identification of patients with advanced progressive diseases who are likely to have palliative care needs in primary healthcare and evaluate their accuracy. DESIGN: Systematic review (PROSPERO registration number CRD42019111568). DATA SOURCES: Cochrane, MEDLINE, Embase and CINAHL were searched from inception to March 2019. RESULTS: From 4,127 unique articles screened, 25 reported the use or development of 10 screening tools. Most tools use prediction of death and/or deterioration as a proxy for the identification of people with potential palliative care needs. The tools are based on a wide range of general and disease-specific indicators. The accuracy of five tools was assessed in eight studies; these tools differed significantly in their ability to identify patients with potential palliative care needs with sensitivity ranging from 3% to 94% and specificity ranging from 26% to 99%. CONCLUSION: The ability of current screening tools to identify patients with advanced progressive diseases who are likely to have palliative care needs in primary care is limited. Further research is needed to identify standardised screening processes that are based not only on predicting mortality and deterioration but also on anticipating the palliative care needs and predicting the rate and course of functional decline. This would prompt a comprehensive assessment to identify and meet their needs on time.

Critical review of leaflets about conservative management used in uk renal services.

BACKGROUND: Written information supplements nurse-led education about treatment options. It is unclear if this information enhances patients' reasoning about conservative management (CM) and renal replacement therapy decisions. AIM: This study describes a critical review of resources U.K. renal staff use when providing CM options to people with Established Kidney Disease (EKD) during usual pre-dialysis education. DESIGN: A survey using mixed methods identified and critically analysed leaflets about CM. PARTICIPANTS & MEASUREMENTS: All 72 renal units in the United Kingdom received an 11-item questionnaire to elicit how CM education is delivered, satisfaction and/or needs with patient resources and staff training. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. RESULTS: Fifty-four (75%) units participated. Patients discuss CM with a nephrologist (98%) or nurse (100%). Eighteen leaflets were reviewed, mean scores were 8.44 out of 12 (range 5-12, SD = 2.49) for information presentation; 3.50 out of 6 (range 0-6, SD = 1.58) for inclusion of information known to support shared decision-making and 2.28 out of 6 (range 1-4, SD = 0.96) for presenting non-biased information. CONCLUSIONS: Nurses preferred communicating via face-to-face contact with patients and/or families because of the emotional consequences and complexity of planning treatment for the next stage of a person's worsening kidney disease. Conversations were supplemented with written information; 66% of which were produced locally. Staff perceived a need for using leaflets, and spend time and resources developing them to support their services. However, no leaflets included the components needed to help people reason about conservative care and renal replacement therapy options during EKD education consultations.