The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

Longitudinal realist evaluation of the Dementia PersonAlised Care Team (D-PACT) intervention: protocol.

BACKGROUND: Different dementia support roles exist but evidence is lacking on which aspects are best, for whom, and in what circumstances, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT) developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AIM: Phase 2 of the programme aims to 1) refine the programme theory on how, when, and for whom the intervention works; and 2) evaluate its value and impact. DESIGN & SETTING: A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across South West and North West England where low-income or ethnic minority populations (for example, South Asian) are represented. Design was informed by patient, public, and professional stakeholder input and phase 1 findings. METHOD: High-volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers, and practitioners. Analyses will comprise the following: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4a) health economic analysis examining costs of delivery; and 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation, and stakeholder co-analysis. CONCLUSION: The realist evaluation will describe how, why, and for whom the intervention does or does not lead to change over time. It will also demonstrate how a non-randomised design can be more appropriate for complex interventions with similar questions or populations.

Routinely used interventions to improve attachment in infants and young children: a national survey and two systematic reviews.

BACKGROUND: Attachment refers to an infant's innate tendency to seek comfort from their caregiver. Research shows that attachment is important in promoting healthy social and emotional development. Many parenting interventions have been developed to improve attachment outcomes for children. However, numerous interventions used in routine practice have a limited evidence base, meaning that we cannot be sure if they are helpful or harmful. OBJECTIVES: This research aimed to conduct a large-scale survey to identify what interventions are being used in UK services to improve child attachment; conduct a systematic review to evaluate the evidence for parenting attachment interventions; and develop recommendations for future research and practice. DESIGN AND METHODS: We worked closely with our Expert Reference Group to plan a large-scale survey focused on relevant UK services. We then conducted two systematic reviews. One searched for all randomised controlled trial evidence for any attachment parenting intervention. The second searched for all research for the top 10 routinely used interventions identified from the survey. RESULTS: The survey collected 625 responses covering 734 UK services. The results identified the 10 most commonly used interventions. The responses showed a limited use of validated measures and a wide variety of definitions of attachment. For the first review, seven studies were included from 2516 identified records. These were combined with results from previous reviews conducted by the team. Meta-analyses showed that, overall, parenting interventions are effective in reducing disorganised attachment (pooled odds ratio 0.54, 95% confidence interval 0.39 to 0.77) and increasing secure attachment (pooled odds ratio 1.85, 95% confidence interval 1.36 to 2.52). The second review searched the literature for the top 10 routinely used interventions identified by the survey; 61 studies were included from 1198 identified records. The results showed that many of the most commonly used interventions in UK services have a weak evidence base and those with the strongest evidence base are not as widely used. CONCLUSIONS: There is a need for better links between research and practice to ensure that interventions offered to families are safe and effective. Possible reasons for the disparity include the cost and accessibility of training. There is also a need for improved understanding by professionals regarding the meaning of attachment. LIMITATIONS: Although the survey had good geographical spread, most respondents were based in England. For review 2 we were unable to access a large number of papers; however, we conducted extensive reference checking to account for this. FUTURE WORK: There is a need for robust research to test the efficacy of routinely used attachment interventions. Research could also explore why routinely used interventions are not consistently subject to thorough evaluation; how to embed dissemination, cost-effectiveness, fidelity and sustainability into research; and how to keep clinical practice up to date with research developments. STUDY REGISTRATION: This study is registered as PROSPERO CRD42019137362. FUNDING: This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 27, No. 2. See the NIHR Journals Library website for further project information.

Attachment refers to an infant's natural instinct to seek comfort from their main carers. There are four ways in which infants show attachment ('attachment patterns'). These are known as secure, insecure-avoidant, insecure-resistant and disorganised. Secure attachment usually occurs with consistent and responsive parenting/caregiving and is linked with positive social and emotional child development. Inconsistent, neglectful or abusive parenting/caregiving can lead to problems with attachment, including disorganised attachment, and is linked to poorer outcomes. Parenting support, education and therapies help parents improve infant attachment and their child's outcomes. We surveyed UK services to see what they offered families with attachment problems. A total of 734 UK services responded. This identified 10 therapies or support packages most commonly offered to parents. We checked what research had been done on these. We found very little. We found 61 studies of support packages with quite good evidence, but these were generally not ones offered by UK services. We also looked in detail at research for all types of support/therapies to improve attachment. We looked for the best research (called 'randomised controlled trials'); 26 studies had tested therapies to see if they improved secure attachment and 20 had tested whether or not they improved (i.e. reduced) disorganised attachment. We found that these therapies or support packages are good at increasing secure attachment and improving disorganised attachment. Mostly they did this by helping parents/caregivers improve caregiving and particularly how sensitive and responsive they are to their child and their needs. Currently, practice is not following research, and research is not being done to properly evaluate current practice. We need to improve the evidence and the way it links to practice, including how those organising and paying for services are made aware of up-to-date research to make sure that the best treatments are available. High-quality training for staff is also important.

Parkinson's disease - palliative care needs assessment tool: adaptation and psychometric testing.

OBJECTIVE: Parkinson's disease is a progressive, life-limiting disease, which benefits from structured palliative care. Systematic recognition and triage of needs helps facilitate care, allows focused referral to specialist palliative care and aids sustainability of services. Existing palliative care tools for Parkinson's are patient/caregiver completed and focus on quantification rather than identification of the need. The Needs Assessment Tool: Progressive Disease in Cancer was designed for rapid identification of unmet needs in cancer. We describe adaptation and psychometric testing of the tool for Parkinson's disease (NAT:Parkinson's disease). METHODS: Set in secondary care, Parkinson's disease outpatient clinics in the UK, this study included people with Parkinson's, age >18, including all disease stages. People with atypical Parkinsonian syndromes were excluded. Adaptation was made using systematic review and focus groups. Construct validity was tested in 50 consecutive patients against established patient and caregiver measures, analysed with Kendall's Tau B. Inter-rater reliability, using video consultations, were calculated in broad range of clinicians involved in Parkinson's disease care using a weighted kappa; 0-0.2=slight, 0.21-0.40=fair, 0.41-0.60=moderate, 0.61-0.80=substantial and p<0.05 indicative of statistically significant agreement. RESULTS: Validity was substantial for two, moderate for five and fair for four constructs. Inter-rater reliability was substantial for one, moderate for three and fair for six constructs. Two constructs failing to demonstrate fair reliability did show very high percentage agreement. CONCLUSION: Findings support the suitability of the NAT:Parkinson's disease for everyday clinical use in the identification and triage of unmet palliative need for people with Parkinson's disease.

Mental Imagery to Reduce Alcohol-related harm in patients with alcohol dependence and alcohol-related liver damaGE: the MIRAGE pilot trial protocol.

INTRODUCTION: In the UK, alcohol use is the main driver of chronic liver disease and each year results in over 1 million unplanned hospital admissions and over 25 000 deaths from alcohol-related liver disease (ArLD). The only effective treatment to prevent progression of liver damage is reducing or ceasing alcohol consumption. Psychological and pharmacological therapies for alcohol misuse are ineffective in patients with ArLD. Functional imagery training (FIT) is a novel psychological therapy that builds on motivational interviewing techniques with multisensory imagery. This pilot trial aims to test the feasibility of training alcohol liaison nurses to deliver FIT therapy and of recruiting and retaining patients with ArLD and alcohol dependence to a randomised trial of FIT and treatment as usual (TAU) versus TAU alone. METHODS AND ANALYSIS: This is a randomised pilot trial of FIT and TAU versus TAU alone in 90 patients with ArLD and alcohol dependence admitted to one of four UK centres. The primary objectives are to estimate rates of screening, recruitment, randomisation, retention, adherence to FIT/TAU and a preliminary assessment of the FIT intervention in the ArLD population. Data from the pilot study will be used to finalise the design of a definitive randomised controlled trial to assess the effectiveness and cost-effectiveness of FIT. The proposed primary outcome measure for the definitive trial is self-reported alcohol use assessed using timeline follow-back. ETHICS AND DISSEMINATION: Research ethics approval was given by the Yorkshire and Humber-Bradford Leeds Research Ethics Committee (reference: 21/YH/0044). Eligible patients will be approached and written informed consent obtained prior to participation. Results will be disseminated through peer-reviewed open access journals, international conferences and a lay summary published on the Trials Unit website and made available to patient groups. TRIAL REGISTRATION NUMBER: ISRCTN41353774.

Diagnosing Autism Spectrum Disorders in Deaf Children Using Two Standardised Assessment Instruments: The ADIR-Deaf Adaptation and the ADOS-2 Deaf Adaptation.

The aim was to investigate the agreement between the ADI-R Deaf adaptation and ADOS-2 Deaf adaptation overall diagnostic categorisation for autism (AUT) and a wider threshold to include autism spectrum (ASD) in a cohort of deaf children with and without ASD. We compared results of the instruments used on their own and when combined and propose standard criteria for the combined use of the ADI-R Deaf adaptation and ADOS-2 Deaf adaptation for use with deaf children. In total, 116 deaf children had a Gold standard NICE guideline assessment; 58 diagnosed with ASD and 58 without ASD, and for both groups a blinded informant based ADI-R Deaf adaptation and direct assessment using the ADOS-2 Deaf adaptation were separately completed. There was moderate agreement between the ADI-R Deaf adaptation and ADOS-2 Deaf adaptation for the wider threshold of ASD (Kappa, 0.433). To achieve the lowest number of false negatives, the most successful assessment tool approach is using the wider threshold of ASD with either ADI-R Deaf adaptation or ADOS-2-Deaf adaptation (95% sensitivity). This compares with 88% for the ADI-R Deaf adaptation alone and 74% for the ADOS-2-Deaf adaptation alone (wider threshold of ASD). To achieve a low number of false positives, the most successful assessment tool approach is a combination of ADI-R Deaf adaptation and ADOS-2- Deaf adaptation (using the narrow threshold of autism for both) (95% specificity). This compares with 83% for the ADI-R Deaf adaptation alone and 81% for the ADOS-2-Deaf adaptation (narrow threshold) alone. This combination is therefore recommended in specialist clinics for diagnostic assessment in deaf children.

Assessment of cytokines, microRNA and patient related outcome measures in conversion disorder/functional neurological disorder (CD/FND): The CANDO clinical feasibility study.

BACKGROUND: Conversion disorder/functional neurological disorder (CD/FND) occurs often in neurological settings and can lead to long-term distress, disability and demand on health care services. Systemic low-grade inflammation might play a role, however, the pathogenic mechanism is still unknown. AIM: 1) To explore the feasibility to establish and assess a cohort of CD/FND with motor symptoms, involving persons with lived experience (PPI). 2) To generate proof of concept regarding a possible role for cytokines, microRNA, cortisol levels and neurocognitive symptoms in patients with motor CD/FND. METHOD: Feasibility study. RESULTS: The study showed active involvement of patients despite high clinical illness burden and disability, neurocognitive symptoms, childhood adverse experiences (ACE) and current life events. The study provided valuable knowledge regarding the feasibility of conducting a study in these patients that will inform future study phases. In the sample there were elevated levels of IL6, IL12, IL17A, IFNg, TNFa and VEGF-a, suggesting systemic low-grade inflammation. Also, microRNAs involved in inflammation and vascular inflammation were correlated with TNFa and VEGFa respectively, suggesting proof of concept for an epigenetic mechanism. Owing to the COVID-19 outbreak, the patient sample was limited to 15 patients. CONCLUSION: It is a novelty that this study is conducted in the clinical setting. This innovative, translational study explores stress-related SLI in CD/FND patients and the feasibility of a larger project aiming to develop new treatments for this vulnerable population. Given the positive findings, there is scope to conduct further research into the mechanism of disease in CD/FND.

Investigating smoking and nicotine dependence among people with severe mental illness during the COVID-19 pandemic: analysis of linked data from a UK Closing the Gap cohort.

Smoking rates are higher for people who use mental health services, which contributes substantially to health inequalities. Smoking can lead to worse COVID-19 outcomes, yet it remains unclear whether smoking has changed for people who use mental health services. We examined smoking patterns in a large clinical cohort of people with severe mental illness, before and during the pandemic. We found high levels of nicotine dependence and heavier patterns of smoking. Although some people had reported quitting, it is likely that smoking inequalities have become further entrenched. Mental health services should seek to mitigate this modifiable risk and source of poor health.

A cluster randomised trial of a Needs Assessment Tool for adult Cancer patients and their carers (NAT-C) in primary care: A feasibility study.

BACKGROUND: People with cancer often have unidentified symptoms and social care needs. The Needs Assessment Tool-Cancer (NAT-C) is a validated, structured method of assessing patient/carer concerns and prompting action, to address unmet need. AIMS: Assess feasibility and acceptability of a definitive two-armed cluster randomised trial of NAT-C in primary care by evaluating: recruitment of GP practices, patients and carers; most effective approach of ensuring NAT-C appointments, acceptability of study measures and follow-up. METHODS: Non-blinded, feasibility study in four General Practices, with cluster randomisation to method of NAT-C appointment delivery, and process evaluation. Adults with active cancer were invited to participate with or without carer. Practices cluster randomised (1:1) to Arm I: promotion and use of NAT-C with a NAT-C trained clinician or Arm II: clinician of choice irrespective of training status. Participants completed study questionnaires at: baseline, 1, 3 and 6 months. Patients booked a 20 minute needs-assessment appointment post-baseline. Patients, carers and GP practice staff views regarding the study sought through interviews/focus groups. Quantitative data were analysed descriptively. Qualitative data were analysed thematically, informed by Normalisation Process Theory. Progression to a definitive trial was assessed against feasibility outcomes, relating to: recruitment rate, uptake and delivery of the NAT-C, data collection and quality. RESULTS: Five GP practices approached, four recruited and trained to use the NAT-C. Forty-seven participants and 17 carers recruited. At baseline, 34/47 (72%) participants reported at least one moderate-severe unmet need, confirming study rationale. 32/47 (68%) participants received a NAT-C-guided consultation, 19 of which on Arm I. Study attrition at one month (n = 44 (94%), n = 16 (94%)), three months (n = 38 (81%), n = 14 (82%)) and six months (n = 32 (68%), n = 10 (59%)). Fifteen patient interviews conducted across the whole study and one focus group at each GP practice. Participants supported a definitive study and found measures acceptable. CONCLUSION: The feasibility trial indicated that recruitment rate, intervention uptake and data collection were appropriate, with refinements, for a definitive multi-centre cluster randomised controlled trial. Feasibility outcomes informed the design of a 2-armed cluster randomised controlled trial to test the effectiveness and cost-effectiveness of the NAT-C compared with usual care.

A large population-based study of the mental health and wellbeing of children and young people in the North of England.

BACKGROUND: There has been a recent reported rise in prevalence of mental health problems among children in the United Kingdom, alongside increased referrals into specialist services. There is a need for up-to-date information regarding changing trends of young people's mental health to allow for improved understanding and service planning. OBJECTIVES: This article aims to provide an overview of the current mental health and well-being of years 8, 9 and 11 secondary school-aged pupils from two large regions in the North of England. METHOD: This was a cohort cross-sectional study. Measures including the Strengths and Difficulties questionnaire, the EQ-5D-Y, social media use questions, and a mental health service use questionnaire were completed by participants. RESULTS: In total, 6328 questionnaires were returned from 21 secondary schools. One in 10 participating pupils scored 'very high' for total mental health difficulties. Significant differences on well-being scores were found between both gender and year groups. CONCLUSION: In recent years, the proportion of children facing mental health problems has increased. In particular, high levels of female pupils and year 11 pupils report facing difficulties. It is important to develop targeted, accessible interventions, and to continue to collect up-to-date measures for this population.

Antenatal risk factors for child maltreatment: Linkage of data from a birth cohort study to child welfare records.

BACKGROUND: Understanding the risk factors for child maltreatment is critical to efforts to reduce its prevalence. OBJECTIVE: This study investigated the association between characteristics and circumstances of mothers during pregnancy and the subsequent identification of concerns about child maltreatment. PARTICIPANTS AND SETTING: The study drew on two data sets: (i) data from questionnaires administered to the expectant mothers of 11,332 children born in a deprived multi-ethnic local authority in England between 2007 and 2011, for a birth cohort study, and (ii) administrative data on children referred to child welfare services. METHODS: The linkage of these two pre-existing data sets enabled the prospective study of risk factors for child maltreatment. RESULTS: A range of factors captured during the antenatal period were associated with an increased likelihood of subsequent recorded child maltreatment concerns, including: younger maternal age (HR=0.96; p < .001), lower maternal education level (HR=1.36; p < .001), maternal mental illness (HR=1.17; p = .001), maternal smoking in pregnancy (HR=1.69; p < .001), single motherhood (HR=1.41; p = .022), larger family size (HR=1.13; p < .001), multiple deprivation (HR=1.01; p = .011), social housing (HR=1.72; p < .001), paternal unemployment (HR=1.79; p < .001), and the receipt of means-tested welfare benefits (HR=1.43; p < .001). A greater total number of risk factors during pregnancy also increased the risk of subsequent maltreatment concerns (HR=1.45; p < .001). CONCLUSIONS: The identification of multiple risk factors in this study supports claims that single targeted interventions are unlikely to be successful in preventing or reducing child maltreatment due to its multifactorial nature, and that multidimensional interventions are required.

Child mental health and resilience in the context of socioeconomic disadvantage: results from the Born in Bradford cohort study.

Socioeconomic disadvantage has been linked to mental health difficulties in children and adolescents, although many children appear to do well despite exposure to financial adversity in childhood. Our study looked at the effects of family financial difficulty on children's mental health outcomes (n = 636) at 4-5 years in a multi-ethnic UK cohort, the Born in Bradford cohort. We considered potential parent and child variables promoting resilience in this population. Univariate linear regression was used to identify associations between family financial difficulty measured antenatally and child mental health difficulties measured by teacher-rated Strengths and Difficulties (SDQ) scores at 4-5 years. Hierarchical multivariate regression was used to test for potential moderating effects of parent and child factors. Mothers completed the General Health Questionnaire-28, Kessler-6 Questionnaire and questions related to parenting warmth, hostility and confidence. Parent-rated Infant Characteristic Questionnaires and teacher-rated Early Years Foundation Stage scores provided information on child temperament, literacy and physical development as potential moderators. Financial difficulty was associated with worse mental health outcomes in children. High parent warmth, high child literacy scores and physical development scores were all associated with positive child mental health outcomes at 4-5 years. In terms of protective effects, only maternal warmth was found to significantly moderate the relationship between financial difficulty and child mental health difficulties. The current study demonstrates that family financial difficulty is associated with poorer child mental health outcomes in a UK cohort of mothers and their school-aged children. It provides evidence of the positive relationships between warm parenting, child literacy and child physical development with mental health in young children. The study supports the finding that warm parenting moderates the relationship between family financial difficulty and interventions supporting this aspect of parenting may therefore provide particular benefit to children growing up in this context.

Development of a Clinical Decision Rule for the Early Safe Discharge of Patients with Mild Traumatic Brain Injury and Findings on Computed Tomography Brain Scan: A Retrospective Cohort Study.

International guidelines recommend routine hospital admission for all patients with mild traumatic brain injury (TBI) who have injuries on computed tomography (CT) brain scan. Only a small proportion of these patients require neurosurgical or critical care intervention. We aimed to develop an accurate clinical decision rule to identify low-risk patients safe for discharge from the emergency department (ED) and facilitate earlier referral of those requiring intervention. A retrospective cohort study of case notes of patients admitted with initial Glasgow Coma Scale 13-15 and injuries identified by CT was completed. Data on a primary outcome measure of clinically important deterioration (indicating need for hospital admission) and secondary outcome of neurosurgery, intensive care unit admission, or intubation (indicating need for neurosurgical admission) were collected. Multi-variable logistic regression was used to derive models and a risk score predicting deterioration using routinely reported clinical and radiological candidate variables identified in a systematic review. We compared the performance of this new risk score with the Brain Injury Guideline (BIG) criteria, derived in the United States. A total of 1699 patients were included from three English major trauma centers. A total of 27.7% (95% confidence interval [CI], 25.5-29.9) met the primary and 13.1% (95% CI, 11.6-14.8) met the secondary outcomes of deterioration. The derived clinical decision rule suggests that patients with simple skull fractures or intracranial bleeding <5 mm in diameter who are fully conscious could be safely discharged from the ED. The decision rule achieved a sensitivity of 99.5% (95% CI, 98.1-99.9) and specificity of 7.4% (95% CI, 6.0-9.1) to the primary outcome. The BIG criteria achieved the same sensitivity, but lower specificity (5%). Our empirical models showed good predictive performance and outperformed the BIG criteria. This would potentially allow ED discharge of 1 in 20 patients currently admitted for observation. However, prospective external validation and economic evaluation are required.

Psychometric Properties of the Needs Assessment Tool-Progressive Disease Cancer in U.K. Primary Care.

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 UK primary care setting. Effectiveness in reducing patient and carer unmet needs and issues regarding implementation are yet to be evaluated.

The complex relationship between household income of family caregivers, access to palliative care services and place of death: A national household population survey.

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 end of life.

An evaluation of the costs and consequences of Children Community Nursing teams.

AIMS: Recent years have seen an increasing shift towards providing care in the community, epitomised by the role of Children's Community Nursing (CCN) teams. However, there have been few attempts to use robust evaluative methods to interrogate the impact of such services. This study sought to evaluate whether reduction in secondary care costs, resulting from the introduction of 2 CCN teams, was sufficient to offset the additional cost of commissioning. METHODS: Among the potential benefits of the CCN teams is a reduction in the burden placed on secondary care through the delivery of care at home; it is this potential reduction which is evaluated in this study via a 2-part analytical method. Firstly, an interrupted time series analysis used Hospital Episode Statistics data to interrogate any change in total paediatric bed days as a result of the introduction of 2 teams. Secondly, a costing analysis compared the cost savings from any reduction in total bed days with the cost of commissioning the teams. This study used a retrospective longitudinal study design as part of the transforming children's community services trial, which was conducted between June 2012 and June 2015. RESULTS: A reduction in hospital activity after introduction of the 2 nursing teams was found, (9634 and 8969 fewer bed days), but this did not reach statistical significance. The resultant cost saving to the National Health Service was less than the cost of employing the teams. CONCLUSION: The study represents an important first step in understanding the role of such teams as a means of providing a high quality of paediatric care in an era of limited resource. While the cost saving from released paediatric bed days was not sufficient to demonstrate cost-effectiveness, the analysis does not incorporate wider measures of health care utilisation and nonmonetary benefits resulting from the CCN teams.

Social Stories™ to alleviate challenging behaviour and social difficulties exhibited by children with autism spectrum disorder in mainstream schools: design of a manualised training toolkit and feasibility study for a cluster randomised controlled trial with nested qualitative and cost-effectiveness components.

BACKGROUND: A Social Story™ (Carol Gray) is a child-friendly intervention that is used to give children with autism spectrum disorders (ASDs) social information in situations where they have social difficulties. Limited evidence mainly using single-case designs suggests that they can reduce anxiety and challenging behaviour. OBJECTIVES: The objectives were to conduct a systematic review, use this to develop a manualised intervention and run a feasibility trial to inform a fully powered randomised controlled trial (RCT) on their clinical effectiveness and cost-effectiveness in schools. DESIGN: This is a three-stage study following the Medical Research Council framework for complex interventions. Specifically, it involved a theoretical phase, a qualitative stage and a feasibility trial stage. SETTING: Qualitative interviews and focus groups took place in Child and Adolescent Mental Health Service and primary care settings. The feasibility study took place in 37 local mainstream schools. PARTICIPANTS: Fifty children (aged 5-15 years) in mainstream school settings with a diagnosis of ASD were entered into the trial. For each child, an associated teacher and parent was also recruited. INTERVENTIONS: The intervention was a goal-setting session followed by a manualised toolkit (including a training session) for creating Social Stories™ for use with school-aged children. The comparator treatment was a goal-setting session followed by an attention control. Both arms received treatment as usual. MAIN OUTCOME MEASURES: Outcomes tested as part of the feasibility study included child- and proxy-completed questionnaires for mental health, quality of life and goal-based outcome measures. Adults additionally completed behaviour diaries and the parental stress index. RESULTS: The review found that the research into social stories is predominantly based in the USA, carried out in under-12-year-olds and using single-case designs. Most studies either did not follow established Social Story criteria or did not report if they did. The assessment of effectiveness presents a largely positive picture but is limited by methodological issues. There were no adequate RCTs and insufficient information to assess a number of important sources of potential bias in most studies. A manualised intervention was produced using an iterative process between user focus groups and a writing team, and assessed in the feasibility study. All 50 participant groups were recruited within the study time frame. Two outcome measures, the Social Responsiveness Scale-2 and the custom-made goal-based measure, showed high levels of completion rates and appeared to be capturing social and behaviour skills targeted by the use of Social Stories. Detailed recommendations for a full trial are provided. LIMITATIONS: Blinding of participants was not feasible. Treatment fidelity was not assessed because of low levels of story return rates. CONCLUSIONS: The study showed that a fully powered RCT is feasible with an extended geographical footprint. A large amount of data and information has helped to inform the design of this RCT, which will be the subject of a future research grant application. Future work could focus on developing an appropriate blinded outcome measure for this population. STUDY REGISTRATION: This study is registered as PROSPERO CRD42011001440. TRIAL REGISTRATION: Current Controlled Trials ISRCTN96286707. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 6. See the NIHR Journals Library website for further project information.

Does the use of specialist palliative care services modify the effect of socioeconomic status on place of death? A systematic review.

BACKGROUND: Cancer patients in lower socioeconomic groups are significantly less likely to die at home and experience more barriers to access to palliative care. It is unclear whether receiving palliative care may mediate the effect of socioeconomic status on place of death. AIM: This review examines whether and how use of specialist palliative care may modify the effect of socioeconomic status on place of death. DESIGN: A systematic review was conducted. Eligible papers were selected and the quality appraised by two independent reviewers. Data were synthesised using a narrative approach. DATA SOURCES: MEDLINE, Embase, CINAHL, PsycINFO and Web of Knowledge were searched (1997-2013). Bibliographies were scanned and experts contacted. Papers were included if they reported the effect of both socioeconomic status and use of specialist palliative care on place of death for adult cancer patients. RESULTS: Nine studies were included. All study subjects had received specialist palliative care. With regard to place of death, socioeconomic status was found to have (1) no effect in seven studies and (2) an effect in one study. Furthermore, one study found that the effect of socioeconomic status on place of death was only significant when patients received standard specialist palliative care. When patients received more intense care adapted to their needs, the effect of socioeconomic status on place of death was no longer seen. CONCLUSION: There is some evidence to suggest that use of specialist palliative care may modify the effect of socioeconomic status on place of death.

Does home oxygen therapy (HOT) in addition to standard care reduce disease severity and improve symptoms in people with chronic heart failure? A randomised trial of home oxygen therapy for patients with chronic heart failure.

BACKGROUND: Home oxygen therapy (HOT) is commonly used for patients with severe chronic heart failure (CHF) who have intractable breathlessness. There is no trial evidence to support its use. OBJECTIVES: To detect whether or not there was a quality-of-life benefit from HOT given as long-term oxygen therapy (LTOT) for at least 15 hours per day in the home, including overnight hours, compared with best medical therapy (BMT) in patients with severely symptomatic CHF. DESIGN: A pragmatic, two-arm, randomised controlled trial recruiting patients with severe CHF. It included a linked qualitative substudy to assess the views of patients using home oxygen, and a free-standing substudy to assess the haemodynamic effects of acute oxygen administration. SETTING: Heart failure outpatient clinics in hospital or the community, in a range of urban and rural settings. PARTICIPANTS: Patients had to have heart failure from any aetiology, New York Heart Association (NYHA) class III/IV symptoms, at least moderate left ventricular systolic dysfunction, and be receiving maximally tolerated medical management. Patients were excluded if they had had a cardiac resynchronisation therapy device implanted within the past 3 months, chronic obstructive pulmonary disease fulfilling the criteria for LTOT or malignant disease that would impair survival or were using a device or medication that would impede their ability to use LTOT. INTERVENTIONS: Patients received BMT and were randomised (unblinded) to open-label LTOT, prescribed for 15 hours per day including overnight hours, or no oxygen therapy. MAIN OUTCOME MEASURES: The primary end point was quality of life as measured by the Minnesota Living with Heart Failure (MLwHF) questionnaire score at 6 months. Secondary outcomes included assessing the effect of LTOT on patient symptoms and disease severity, and assessing its acceptability to patients and carers. RESULTS: Between April 2012 and February 2014, 114 patients were randomised to receive either LTOT or BMT. The mean age was 72.3 years [standard deviation (SD) 11.3 years] and 70% were male. Ischaemic heart disease was the cause of heart failure in 84%; 95% were in NYHA class III; the mean left ventricular ejection fraction was 27.8%; and the median N-terminal pro-B-type natriuretic hormone was 2203 ng/l. The primary analysis used a covariance pattern mixed model which included patients only if they provided data for all baseline covariates adjusted for in the model and outcome data for at least one post-randomisation time point (n = 102: intervention, n = 51; control, n = 51). There was no difference in the MLwHF questionnaire score at 6 months between the two arms [at baseline the mean score was 54.0 (SD 18.4) for LTOT and 54.0 (SD 17.9) for BMT; at 6 months the mean score was 48.1 (SD 18.5) for LTOT and 49.0 (SD 20.2) for BMT; adjusted mean difference -0.10, 95% confidence interval (CI) -6.88 to 6.69; p = 0.98]. At 3 months, the adjusted mean MLwHF questionnaire score was lower in the LTOT group (-5.47, 95% CI -10.54 to -0.41; p = 0.03) and breathlessness scores improved, although the effect did not persist to 6 months. There was no effect of LTOT on any secondary measure. There was a greater number of deaths in the BMT arm (n = 12 vs. n = 6). Adherence was poor, with only 11% of patients reporting using the oxygen as prescribed. CONCLUSIONS: Although the study was significantly underpowered, HOT prescribed for 15 hours per day and subsequently used for a mean of 5.4 hours per day has no impact on quality of life as measured by the MLwHF questionnaire score at 6 months. Suggestions for future research include (1) a trial of patients with severe heart failure randomised to have emergency oxygen supply in the house, supplied by cylinders rather than an oxygen concentrator, powered to detect a reduction in admissions to hospital, and (2) a study of bed-bound patients with heart failure who are in the last few weeks of life, powered to detect changes in symptom severity. TRIAL REGISTRATION: Current Controlled Trials ISRCTN60260702. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 19, No. 75. See the NIHR Journals Library website for further project information.

Clinical effectiveness and cost-effectiveness of parenting interventions for children with severe attachment problems: a systematic review and meta-analysis.

BACKGROUND AND OBJECTIVES: Services have variable practices for identifying and providing interventions for 'severe attachment problems' (disorganised attachment patterns and attachment disorders). Several government reports have highlighted the need for better parenting interventions in at-risk groups. This report was commissioned to evaluate the clinical effectiveness and cost-effectiveness of parenting interventions for children with severe attachment problems (the main review). One supplementary review explored the evaluation of assessment tools and a second reviewed 10-year outcome data to better inform health economic aspects of the main review. DATA SOURCES: A total of 29 electronic databases were searched with additional mechanisms for identifying a wide pool of references using the Cochrane methodology. Examples of databases searched include PsycINFO (1806 to January week 1, 2012), MEDLINE and MEDLINE In-Process & Other Non-Indexed Citations (1946 to December week 4, 2011) and EMBASE (1974 to week 1, 2012). Searches were carried out between 6 and 12 January 2012. REVIEW METHODS: Papers identified were screened and data were extracted by two independent reviewers, with disagreements arbitrated by a third independent reviewer. Quality assessment tools were used, including quality assessment of diagnostic accuracy studies - version 2 and the Cochrane risk of bias tool. Meta-analysis of randomised controlled trials (RCTs) of parenting interventions was undertaken. A health economics analysis was conducted. RESULTS: The initial search returned 10,167 citations. This yielded 29 RCTs in the main review of parenting interventions to improve attachment patterns, and one involving children with reactive attachment disorder. A meta-analysis of eight studies seeking to improve outcome in at-risk populations showed statistically significant improvement in disorganised attachment. The interventions saw less disorganised attachment at outcome than the control (odds ratio 0.47, 95% confidence interval 0.34 to 0.65; p < 0.00001). Much of this focused around interventions improving maternal sensitivity, with or without video feedback. In our first supplementary review, 35 papers evaluated an attachment assessment tool demonstrating validity or psychometric data. Only five reported test-retest data. Twenty-six studies reported inter-rater reliability, with 24 reporting a level of 0.7 or above. Cronbach's alphas were reported in 12 studies for the comparative tests (11 with α > 0.7) and four studies for the reference tests (four with α > 0.7). Three carried out concurrent validity comparing the Strange Situation Procedure (SSP) with another assessment tool. These had good sensitivity but poor specificity. The Disturbances of Attachment Interview had good sensitivity and specificity with the research diagnostic criteria (RDC) for attachment disorders. In our supplementary review of 10-year outcomes in cohorts using a baseline reference standard, two studies were found with disorganised attachment at baseline, with one finding raised psychopathology in adolescence. Budget impact analysis of costs was estimated because a decision model could not be justifiably populated. This, alongside other findings, informed research priorities. LIMITATIONS: There are relatively few UK-based clinical trials. A 10-year follow-up, while necessary for our health economists for long-term sequelae, yielded a limited number of papers. CONCLUSIONS: Maternal sensitivity interventions show good outcomes in at-risk populations, but require further research with complex children. The SSP and RDC for attachment disorders remain the reference standards for identification until more concurrent and predictive validity research is conducted. A birth cohort with sequential attachment measures and outcomes across different domains is recommended with further, methodologically sound randomised controlled intervention trials. The main area identified for future work was a need for good-quality RCTs in at-risk groups such as those entering foster care or adoption. STUDY REGISTRATION: This study is registered as PROSPERO CRD42011001395. FUNDING: The National Institute for Health Research Health Technology Assessment programme.