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Objectives While guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End-of-Life Care Strategy was introduced. Methods We conducted sequential cross-sectional studies of decedents within the UK’s Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (n=5426), dementia (n=7339), heart failure (n=6409) or cancer (n=18 668) who died during three 1 year periods (April 2009 to March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data. Results From 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared with the first. Conclusions Recording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End-of-Life Care Strategy, but remains inadequate.

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Objectives While guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End-of-Life Care Strategy was introduced. Methods We conducted sequential cross-sectional studies of decedents within the UK’s Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (n=5426), dementia (n=7339), heart failure (n=6409) or cancer (n=18 668) who died during three 1 year periods (April 2009 to March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data. Results From 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared with the first. Conclusions Recording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End-of-Life Care Strategy, but remains inadequate.

Introduction Flexible sigmoidoscopy (FS) screening is associated with reduced colorectal cancer incidence and mortality when offered as a one-off test to men and women aged 55-64. The test, also referred to as the 'bowel scope screening' (BSS) test, was added to England's national Bowel Cancer Screening Programme in March 2013, where it is offered to men and women aged 55. Since its implementation, uptake of the BSS test has been low, with only 43% of the eligible population attending an appointment. Sending non-participants a reminder at age 56 has been shown to improve uptake by up to nine percentage points at a single centre in London; we hypothesise that adding a general practitioners (GPs) endorsement to the reminder could improve uptake even further. Methods and analysis This paper describes the protocol for a randomised controlled trial which will examine the effectiveness of adding a GPs endorsement to a reminder for BSS non-participants aged 56. All screening-eligible adults who have not responded to a BSS appointment at London North West Healthcare NHS Trust within 12 months of their initial invitation will be randomised to receive either a GP-endorsed reminder letter or reminder letter without GP endorsement. The primary outcome will be the proportion of individuals screened within each group 8 weeks after the reminder. Statistical comparisons will be made using univariate and multivariate logistic regression, with 'uptake' as the outcome variable, GP reminder group as the exposure and sociodemographic variables as covariates. Ethics and dissemination The study was approved by the Yorkshire & Humber-Bradford Leeds Research Ethics Committee (16/YH/0298) and the Confidentiality Advisory Group (17/CAG/0162). The results will be disseminated in a peer-reviewed journal in accordance with the Consort statement and will be made available to the public. Trial registration number ISRCTN82867861.

© 2017, © The Author(s) 2017. Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. Aim: To investigate associations between family caregivers’ household income, patients’ access to specialist palliative care and place of patients’ death, by level of personal end-of-life care. Design: A cross-sectional community household population survey. Setting and participants: Respondents to the Household Survey for England. Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related (p < 0.001). Palliative care services reduced the proportion of deaths in hospital (p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not (p < 0.001). Respondents’ income was not associated with palliative care access (p = 0.233). Overall, respondents’ income and home death were not related (p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home (p = 0.069). Conclusion: For people who had someone close to them die, decedents’ access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents’ income was unrelated to care recipients’ place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the en

© 2018 American Academy of Hospice and Palliative Medicine Background: The assessment of patients' needs for care is a critical step in achieving patient-centered cancer care. Tools can be used to assess needs and inform care planning. The Needs Assessment Tool:Progressive Disease–Cancer (NAT:PD-C) is an Australian oncology clinic tool for assessment by clinicians of patients' and carers' palliative care needs. This has not been validated in the U.K. primary care setting. Aim: The aim of this study was to test the psychometric properties and acceptability of a U.K. primary care adapted NAT:PD-C. Design: Reliability: NAT:PD-C–guided video-recorded consultations were viewed, rated, and rerated by clinicians. Weighted Fleiss' kappa and prevalence- and bias-adjusted kappa statistics were used. Construct: During a consultation, general medical practitioners (GPs) used NAT:PD-C, patient measures (Edmonton Symptom Assessment Scale; Research Utilisation Group Activities of Daily Living; Palliative care Outcome Score; Australian Karnofsky Performance Scale), and carer measures (Carer Strain Index; Carer Support Needs Assessment Tool). Kendall's Tau-b was used. Setting/Participants: GPs, nurses, patients, and carers were recruited from primary care practices. Results: Reliability: All patients' well-being items and four of five items in the carer/family ability to care section showed adequate interrater reliability. There was moderate test-retest reliability for five of six in the patients' well-being section and five of five in the carer/family ability to care section. Construct: There was at least fair agreement for five of six of patients' well-being items; high for daily living (Kendall's Tau-b = 0.57, P < 0.001). The NAT:PD-C has adequate carer construct validity (five of eight) with strong agreement for two of eight patients. Over three-quarters of GPs considered the NAT:PD-C to have high acceptability. Conclusion: The NAT PD-C is reliable, valid, and acceptable in the

© Jason Boland, et al., 2016; Published by Mary Ann Liebert, Inc. 2016. Background: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice. Objective: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD. Methods: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient (n = 7; n = 4); one caregiver (n = 3); and one clinician (n = 8). There was a single caregiver interview, and an expert consensus group - academics (n = 3), clinicians (n = 9), patients (n = 4), and caregivers (n = 2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached. Results: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations. Conclusions: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing.

BACKGROUND: Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances.METHODS: Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted.FINDINGS: HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio [OR] 2.79; 95% CI 136, 5.74) and use of palliative care services (odds ratio: 1.95, 95% CI: 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data.CONCLUSIONS: A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome.

BACKGROUND: It is unclear whether more timely cancer diagnosis brings favourable outcomes, with much of the previous evidence, in some cancers, being equivocal. We set out to determine whether there is an association between time to diagnosis, treatment and clinical outcomes, across all cancers for symptomatic presentations. METHODS: Systematic review of the literature and narrative synthesis. RESULTS: We included 177 articles reporting 209 studies. These studies varied in study design, the time intervals assessed and the outcomes reported. Study quality was variable, with a small number of higher-quality studies. Heterogeneity precluded definitive findings. The cancers with more reports of an association between shorter times to diagnosis and more favourable outcomes were breast, colorectal, head and neck, testicular and melanoma. CONCLUSIONS: This is the first review encompassing many cancer types, and we have demonstrated those cancers in which more evidence of an association between shorter times to diagnosis and more favourable outcomes exists, and where it is lacking. We believe that it is reasonable to assume that efforts to expedite the diagnosis of symptomatic cancer are likely to have benefits for patients in terms of improved survival, earlier-stage diagnosis and improved quality of life, although these benefits vary between cancers.

Interstitial lung disease (ILD) is a non-malignant progressive disease which causes breathlessness, cough, fatigue, psycho-social, financial and spiritual distress; difficult for patients and their family carers. The Needs Assessment Tool: Progressive Disease (NAT:PD-C) was developed as an "aide-memoire" to help clinicians identify a range of palliative care needs in people with cancer, and their carers, in daily practice. We have adapted this tool for people with ILD.

Contains fulltext : 118262.pdf (publisher's version ) (Open Access), OBJECTIVES: To develop and pilot a theory and evidence-based intervention to improve quality of life (QoL) in people with colorectal cancer. DESIGN: A complex intervention development study. SETTING: North East Scotland and Glasgow. PARTICIPANTS: Semistructured interviews with people with colorectal cancer (n=28), cancer specialists (n=16) and primary care health professionals (n=14) and pilot testing with patients (n=12). INTERVENTIONS: A single, 1 h nurse home visit 6-12 weeks after diagnosis, and telephone follow-up 1 week later (with a view to ongoing follow-up in future). PRIMARY AND SECONDARY OUTCOME MEASURES: Qualitative assessment of intervention feasibility and acceptability. RESULTS: Modifiable predictors of QoL identified previously were symptoms (fatigue, pain, diarrhoea, shortness of breath, insomnia, anorexia/cachexia, poor psychological well-being, sexual problems) and impaired activities. To modify these symptoms and activities, an intervention based on Control Theory was developed to help participants identify personally important symptoms and activities; set appropriate goals; use action planning to progress towards goals; self-monitor progress and identify (and tackle) barriers limiting progress. Interview responses were generally favourable and included recommendations about timing and style of delivery that were incorporated into the intervention. The pilot study demonstrated the feasibility of intervention delivery. CONCLUSIONS: Through multidisciplinary collaboration, a theory-based, acceptable and feasible intervention to improve QoL in colorectal cancer patients was developed, and can now be evaluated.

Item does not contain fulltext, BACKGROUND: Most individuals with lung cancer have symptoms for several months before presenting to their GP. Earlier consulting may improve survival. AIM: To evaluate whether a theory-based primary care intervention increased timely consulting of individuals with symptoms of lung cancer. DESIGN AND SETTING: Open randomised controlled trial comparing intervention with usual care in two general practices in north-east Scotland. METHOD: Smokers and ex-smokers aged >/=55 years were randomised to receive a behavioural intervention or usual care. The intervention comprised a single nurse consultation at participants' general practice and a self-help manual. The main outcomes were consultations within target times for individuals with new chest symptoms (