The financial impact on people with coeliac disease of withdrawing gluten-free food from prescriptions in England: findings from a cross-sectional survey.

BACKGROUND: A lifelong gluten-free diet is the only treatment for coeliac disease. The cost and availability of gluten-free substitute food (GFSF) remain challenging. Some local areas in England have stopped gluten-free prescriptions for coeliac disease. The aim of this paper is to present the quantitative findings of the financial impact of prescription withdrawal on people with coeliac disease. METHODS: A cross-sectional survey with adults in England who reported having been diagnosed with coeliac disease by a health professional. The postal survey was distributed by Coeliac UK to their members in 13 prescribing and 13 non-prescribing local areas that were matched for geographical location and level of deprivation. Additionally, an advertisement for the survey was placed on social media. The questionnaire contained items on the availability and use of prescriptions; the weekly amount spent on GFSF; amount of specific GFSF bought; affordability of GFSF; demographics and health-related variables. Data were analysed by descriptive statistics, analysis of variance and regression analysis. RESULTS: Of the 1697 participants, 809 resided in areas that provided prescriptions and 888 in non-prescribing areas. Participants self-report of their prescription did not always match the local area prescription policy. There was no statistically significant difference between prescribing and non-prescribing areas in how easy or difficult participants found it to obtain GFSF (p = 0.644) and its availability in various locations. Participants in non-prescribing areas purchased most types of GFSF items in statistically significantly higher quantities and thereby spent an additional £11.32/month on GFSF items than participants in prescribing areas (p < 0.001). While taking into account the self-reported prescription status, the amount increased to £14.09/month (p < 0.001). Although affordability to buy GFSF did not differ based on local area prescription policy or self-reported prescription status, it was dependent on equivalised annual income. However, affordability did not influence spending on GFSF. Regression analysis indicated that males and households with additional members with coeliac disease spent more on GFSF. CONCLUSIONS: The study has highlighted that gluten-free prescription withdrawal can have financial implications for people with coeliac disease. Any future changes to the prescription policy of GFSF should consider the impact on the population, especially lower income households.

The affordability and obtainability of gluten-free foods for adults with coeliac disease following their withdrawal on prescription in England: A qualitative study.

BACKGROUND: Changes to prescribing policies in England have restricted or stopped access to gluten-free food on prescription for people with coeliac disease in some geographical areas. The present study aimed to explore the impact of these changes on the affordability and obtainability of gluten-free foods for adults with coeliac disease. METHODS: Semi-structured qualitative interviews (n = 24) were conducted with people with coeliac disease living in areas where prescriptions for gluten-free foods were no longer available, were restricted or followed national guidelines. Interviews explored the impact of gluten-free prescribing changes on the affordability and obtainability of gluten-free food, as well as dietary adherence. RESULTS: All participants considered gluten-free substitute foods to be expensive. Participants felt the availability of gluten-free foods has improved over time, also acknowledging some challenges remain, such as limited local availability. For most, the withdrawal of prescriptions had minimal impact requiring small adjustments such as reducing the quantity of foods obtained. However, greater challenges were faced by those less mobile, permanently sick or disabled and/or on lower incomes. CONCLUSIONS: The majority of participants affected by the withdrawal of prescriptions were able to adapt to cope with these changes. However, participants with mobility issues, who are permanently sick or disabled and/or on lower incomes were struggling to afford and obtain gluten-free substitute foods from elsewhere. The withdrawal of prescriptions may further widen health inequalities. Further research should focus on the long-term impacts of prescription withdrawal for the vulnerable groups identified.

Living well while providing support: validation of LTCQ-Carer for assessing informal carers' quality of life.

PURPOSE: Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate the effectiveness of carer support. We aimed to develop and validate a new quality-of-life measure for carers (LTCQ-Carer) and to assess its potential for use within a clinical pathway. METHODS: Psychometric properties of LTCQ-Carer were tested through cognitive interviews (qualitative phase) and a pilot survey (quantitative phase). Participants were family caregivers of people recently diagnosed with mild cognitive impairment (MCI) or dementia, recruited through one of 14 memory clinics in south-east England. They self-completed the new measure and comparative existing measures (EQ-5D, ASCOT-Carer). Ongoing feedback from memory clinic staff on potential use of LTCQ-Carer was collected. RESULTS: Interview participants (n = 10) found all draft items of LTCQ-Carer relevant and prompted inclusion of a new item on 'time to yourself'. Responses from survey participants (n = 107) indicated acceptability (low missing data), high internal reliability (Cronbach's α = 0.95), and a general construct (single factor loadings 0.43-0.86 for all items). Observation of predicted associations with EQ-5D and ASCOT-Carer supported construct validity. Responsiveness requires further testing as evidence was inconclusive. Clinical staff feedback on potential use was positive. CONCLUSION: LTCQ-Carer is a valid new measure for assessing family caregivers' quality of life across broad health and social care domains, expanding the range of high-quality tools for evaluating carer support. When used concurrently with patient assessment, it could highlight carer needs and prompt appropriate family support at the earliest point in the clinical pathway.

Carers using assistive technology in dementia care at home: a mixed methods study.

INTRODUCTION: Informal carers support persons with dementia to live at home, even with deteriorating physical, social and cognitive issues. This study aims to examine the experiences and impact of Assistive Technology (AT) on carers, providing care for a person with dementia. METHODS: This is an explanatory sequential mixed methods study. The quantitative phase was an online and postal survey using the Carers Assistive Technology Experience Questionnaire and Short Form-12 (SF-12) questionnaire, with carers of persons with dementia in the UK, who used AT. The qualitative phase involved in-depth telephone interviews with a purposive sample of survey respondents and was analysed using hermeneutic phenomenology to develop, compare and explain the findings of the survey. RESULTS: The survey included data from 201 carers. Smartphones (45.5%) and tablet computers (45.0%) were the most frequently used AT. Multiple AT were used in the care of persons with dementia predominantly for safety (78.5%), communication (66.0%), and reminders (62.5%). The SF-12 indicated that carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower mental component scores whilst carers who lived with the person with dementia and older carers had lower physical component scores. Twenty-three carers participated in the interviews, and 5 themes with 14 sub-themes were identified. The interviews helped confirm data from the survey on the impact of AT on the physical, mental and social wellbeing of the carers. It helped describe reasons for satisfaction with AT; how AT was used in daily life and strengthened caring relationships and how wider support systems enhanced the care of a person with dementia using AT. CONCLUSIONS: This study describes the use of AT in the real-world context. AT supplements the care provided to people with dementia in the community. Appropriate use, access to AT and abilities of the carer can enhance the support provided through AT to both carers and the person with dementia.

A core outcome set for randomised controlled trials of physical activity interventions: development and challenges.

BACKGROUND: Core outcome sets are standardised sets of outcomes that should be collected and reported for all clinical trials. They have been widely developed and are increasingly influential in clinical research, but despite this, their use in public health has been limited to date. The aim of this study was to develop a core outcome set for public health trials evaluating interventions to promote physical activity in the general adult population. METHODS: The core outcome set was developed using a three-stage approach: stage one: a review of literature to identify potential domains for inclusion in the core outcome set; stage two: a Delphi survey was carried out to reach consensus about which outcome domains to include in the core outcome set; and stage three: a second Delphi survey was conducted to determine how best to measure the outcome domains included in the core outcome set. RESULTS: A classification of 13 outcome domains of physical activity was developed (stage one). Twenty people completed round one of the first Delphi survey (stage two), reaching a consensus to include two domains in the core outcome set, 'device-based level of physical activity' (80.0%, n = 16) and 'health-related quality of life' (70.0%, n = 14). No further consensus on the remaining outcome domains was reached in round two. Nineteen people completed the second Delphi survey (stage three). Participants rated the accelerometer (mean rating = 3.89, on a scale of 1 (do not recommend) to 5 (highly recommend)) as the best device to measure level of physical activity, and the EQ-5D (73.7%, n = 14) as the most appropriate measure of health-related quality of life. CONCLUSIONS: This study has made progress towards the development of a core outcome set for use in physical activity trials, however, there was limited consensus about which domains to include. The development of the core outcome set was challenged by the need for trial-specific outcomes, and the complexities of collecting, processing and reporting device-based data.

Impact of COVID-19 restrictions on carers of persons with dementia in the UK: a qualitative study.

BACKGROUND: informal carers provide the majority of the support for persons with dementia living at home. Restrictions imposed due to COVID-19 have had a profound impact on the daily life of the entire population. This study provides insight into the impact of these restrictions on carers of people with dementia living at home. DESIGN: qualitative semi-structured interviews. PARTICIPANTS: purposive sample of carers who provide at least 10 hours of care a week for the person with dementia living at home. SETTING: UK. RESULTS: twenty-three carers were interviewed, and thematic analysis identified three main themes-Changes to daily life, impact on carer health and wellbeing and reduced support from health and social support networks. The results highlight the impact of restrictions imposed on daily life and routines due to the pandemic, wellbeing of carers, reduced social support, lack of access to health and care professionals and respite for carers. The restrictions have had negative consequences on carers' wellbeing, and they have experienced difficulties in accessing formal care services and respite care. CONCLUSION: carers attempt to continue to provide physical, emotional and practical support for persons with dementia in the community throughout the COVID-19 restrictions. To prevent a future carer crisis, carers need better support systems including formal carer services, telecare solutions that work for them and additional support for respite, as the restrictions from this pandemic continue.

Use of the Long-Term Conditions Questionnaire (LTCQ) for monitoring health-related quality of life in people affected by cognitive impairment including dementia: pilot study in UK memory clinic services.

PURPOSE: The aim of this study was to validate the Long-Term Conditions Questionnaire (LTCQ) among patients using memory clinic services in England. LTCQ is a short self-administered measure of 'living well with long-term conditions' that has not been previously tested in patients with cognitive impairment. METHODS: The mixed-methods study included cognitive interviews to test the comprehensibility and content validity of LTCQ from the patient's perspective, followed by a pilot survey to test the measure's internal consistency, construct validity, structural validity, and responsiveness. Participants were recruited through memory clinics following a diagnosis of mild cognitive impairment or dementia. RESULTS: Interview respondents (n = 12) all found LTCQ's content relevant, with only minor formatting modifications required. Among survey respondents (n = 105), most patients (86%) were able to self-report answers to LTCQ. High multimorbidity among the sample was associated with reduced LTCQ and EQ-5D scores. Internal consistency of LTCQ was high (Cronbach's α = 0.93), no floor or ceiling effects were observed, and missing data levels were low. Factor analysis results further supported LTCQ's structural validity, and predicted positive correlation with EQ-5D indicated construct validity. Score changes observed in a four-month follow-up survey (n = 61) are suggestive of LTCQ's responsiveness. CONCLUSION: LTCQ is a valid means of assessing health-related quality of life for people living with cognitive impairment (including dementia) in the early period of support following diagnosis. Owing to high levels of multimorbidity in this patient population, LTCQ offers an advantage over dementia-specific measures in capturing the cumulative impact of all LTCs experienced by the patient.

Carers' experiences of assistive technology use in dementia care: a cross sectional survey.

BACKGROUND: Assistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life. METHODS: A cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions. RESULTS: Data from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores. CONCLUSIONS: Carers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia.

Reducing expectations for antibiotics in primary care: a randomised experiment to test the response to fear-based messages about antimicrobial resistance.

BACKGROUND: To reduce inappropriate antibiotic use, public health campaigns often provide fear-based information about antimicrobial resistance (AMR). Meta-analyses have found that fear-based campaigns in other contexts are likely to be ineffective unless respondents feel confident they can carry out the recommended behaviour ('self-efficacy'). This study aimed to test the likely impact of fear-based messages, with and without empowering self-efficacy elements, on patient consultations/antibiotic requests for influenza-like illnesses, using a randomised design. METHODS: We hypothesised that fear-based messages containing empowering information about self-management without antibiotics would be more effective than fear alone, particularly in a pre-specified subgroup with low AMR awareness. Four thousand respondents from an online panel, representative of UK adults, were randomised to receive three different messages about antibiotic use and AMR, designed to induce fear about AMR to varying degrees. Two messages (one 'strong-fear', one 'mild-fear') also contained empowering information regarding influenza-like symptoms being easily self-managed without antibiotics. The main outcome measures were self-reported effect of information on likelihood of visiting a doctor and requesting antibiotics, for influenza-like illness, analysed separately according to whether or not the AMR information was 'very/somewhat new' to respondents, pre-specified based on a previous (non-randomised) survey. RESULTS: The 'fear-only' message was 'very/somewhat new' to 285/1000 (28.5%) respondents, 'mild-fear-plus-empowerment' to 336/1500 (22.4%), and 'strong-fear-plus-empowerment' to 388/1500 (25.9%) (p = 0.002). Of those for whom the respective information was 'very/somewhat new', only those given the 'strong-fear-plus-empowerment' message said they would be less likely to request antibiotics if they visited a doctor for an influenza-like illness (p < 0.0001; 182/388 (46.9%) 'much less likely'/'less likely', versus 116/336 (34.5%) with 'mild-fear-plus-empowerment' versus 85/285 (29.8%) with 'fear-alone'). Those for whom the respective information was not 'very/somewhat new' said they would be less likely to request antibiotics for influenza-like illness (p < 0.0001) across all messages (interaction p < 0.0001 versus 'very/somewhat new' subgroup). The three messages had analogous self-reported effects on likelihood of visiting a doctor and in subgroups defined by believing antibiotics would 'definitely/probably' help an influenza-like illness. Results were reproduced in an independent randomised survey (additional 4000 adults). CONCLUSIONS: Fear could be effective in public campaigns to reduce inappropriate antibiotic use, but should be combined with messages empowering patients to self-manage symptoms effectively without antibiotics.

Rasch analysis of the long-term conditions questionnaire (LTCQ) and development of a short-form (LTCQ-8).

BACKGROUND: The aim of the current study was to evaluate the structural validity of the 20-item long-term conditions questionnaire (LTCQ) and to explore a potential short-form version of the scale using Rasch analysis. METHODS: Data were collected through postal surveys (February 2016-January 2017) from a sample of 1,211 participants diagnosed with at least one long-term condition (LTC). Identified participants were invited through either local authorities for a social care cohort (n = 294) or primary care practices for a health care cohort (n = 917). Participants were mailed a survey, including the LTCQ, demographic questions, a comorbidities measure, and other validated outcome measures. Respondents were invited to complete a follow-up survey including the LTCQ for assessment of reproducibility. RESULTS: The main assumptions of the Rasch model from the LTCQ were fulfilled, although infit and outfit indices indicated some items showed misfit. Misfitted items, items that did not have a preceding set or showed some local dependence were removed one at a time, with the remaining candidate items to form an 8-item short version, the LTCQ-8. The Rasch model for the LTCQ-8 explained 64% variance and had a reliability estimate greater than 0.80. Several items in the LTCQ showed uniform differential item function (DIF) in relation to the number of reported LTCs, age, cohort and type of LTCs, but fewer items exhibited DIF in the LTCQ-8. Spearman's rho correlations between the LTCQ and the LTCQ-8 were strong across the total sample and various subgroups. Correlations between the LTCQ-8 and all reference measures were moderate to strong, and comparable to correlations found between the LTCQ and these measures. CONCLUSIONS: The LTCQ measures a unidimensional construct, and it is therefore acceptable to use a summed total score. The LTCQ-8 also met the assumption of unidimensionality and had comparable construct validity with the LTCQ. Additional validation is required in an independent sample.

Estimating EQ-5D utilities based on the Short-Form Long Term Conditions Questionnaire (LTCQ-8).

PURPOSE: The aim of this work was to develop a mapping algorithm for estimating EuroQoL 5 Dimension (EQ-5D) utilities from responses to the Long-Term Conditions Questionnaire (LTCQ), thus increasing LTCQ's potential as a comprehensive outcome measure for evaluating integrated care initiatives. METHODS: We combined data from three studies to give a total sample of 1334 responses. In each of the three datasets, we randomly selected 75% of the sample and combined the selected random samples to generate the estimation dataset, which consisted of 1001 patients. The unselected 25% observations from each dataset were combined to generate an internal validation dataset of 333 patients. We used direct mapping models by regressing responses to the LTCQ-8 directly onto EQ-5D-5L and EQ-5D-3L utilities as well as response (or indirect) mapping to predict the response level that patients selected for each of the five EQ-5D-5L domains. Several models were proposed and compared on mean squared error and mean absolute error. RESULTS: A two-part model with OLS was the best performing based on the mean squared error (0.038) and mean absolute error (0.147) when estimating the EQ-5D-5L utilities. A multinomial response mapping model using LTCQ-8 responses was used to predict EQ-5D-5L responses levels. CONCLUSIONS: This study provides a mapping algorithm for estimating EQ-5D utilities from LTCQ responses. The results from this study can help broaden the applicability of the LTCQ by producing utility values for use in economic analyses.

Measures for the integration of health and social care services for long-term health conditions: a systematic review of reviews.

BACKGROUND: As people are living longer with higher incidences of long-term health conditions, there is a move towards greater integration of care, including integration of health and social care services. Integrated care needs to be comprehensively and systematically evaluated if it is to be implemented widely. We performed a systematic review of reviews to identify measures which have been used to assess integrated care across health and social care services for people living with long-term health conditions. METHODS: Four electronic databases (PUBMED; MEDLINE; EMBASE; Cochrane library of systematic reviews) were searched in August 2018 for relevant reviews evaluating the integration of health and social care between 1998 and 2018. Articles were assessed according to apriori eligibility criteria. A data extraction form was utilised to collate the identified measures into five categories. RESULTS: Of the 18 articles included, system outcomes and process measures were most frequently identified (15 articles each). Patient or carer reported outcomes were identified in 13 articles while health outcomes were reported in 12 articles. Structural measures were reported in nine articles. Challenges to measuring integration included the identification of a wide range of potential impacts of integration, difficulties in comparing findings due to differences in study design and heterogeneity of types of outcomes, and a need for appropriate, robust measurement tools. CONCLUSIONS: Our review revealed no shortage of measures for assessing the structures, processes and outcomes of integrated care. The very large number of available measures and infrequent use of any common set make comparisons between schemes more difficult. The promotion of core measurement sets and stakeholder consultation would advance measurement in this area.

Measuring the benefits of the integration of health and social care: qualitative interviews with professional stakeholders and patient representatives.

BACKGROUND: Integrated care has the potential to ease the increasing pressures faced by health and social care systems, however, challenges around measuring the benefits for providers, patients, and service users remain. This paper explores stakeholders' views on the benefits of integrated care and approaches to measuring the integration of health and social care. METHODS: Twenty-five semi-structured qualitative interviews were conducted with professional stakeholders (n = 19) and patient representatives (n = 6). Interviews focused on the benefits of integrated care and how it should be evaluated. Data was analysed using framework analysis. RESULTS: Three overarching themes emerged from the data: (1) integrated care and its benefits, with stakeholders defining it primarily from the patient's perspective; (2) potential measures for assessing the benefits of integration in terms of system effects, patient experiences, and patient outcomes; and (3) broader considerations around the assessment of integrated care, including the use of qualitative methods. CONCLUSIONS: There was consensus among stakeholders that patient experiences and outcomes are the best measures of integration, and that the main measures currently used to assess integration do not directly assess patient benefits. Validated health status measures are readily available, however, a substantial shift in practices is required before their use becomes commonplace.

Loss of Fbxw7 synergizes with activated Akt signaling to promote c-Myc dependent cholangiocarcinogenesis.

BACKGROUND & AIMS: The ubiquitin ligase F-box and WD repeat domain-containing 7 (FBXW7) is recognized as a tumor suppressor in many cancer types due to its ability to promote the degradation of numerous oncogenic target proteins. Herein, we aimed to elucidate its role in intrahepatic cholangiocarcinoma (iCCA). METHODS: Herein, we first confirmed that FBXW7 gene expression was reduced in human iCCA specimens. To identify the molecular mechanisms by which FBXW7 dysfunction promotes cholangiocarcinogenesis, we generated a mouse model by hydrodynamic tail vein injection of Fbxw7ΔF, a dominant negative form of Fbxw7, either alone or in association with an activated/myristylated form of AKT (myr-AKT). We then confirmed the role of c-MYC in human iCCA cell lines and its relationship to FBXW7 expression in human iCCA specimens. RESULTS: FBXW7 mRNA expression is almost ubiquitously downregulated in human iCCA specimens. While forced overexpression of Fbxw7ΔF alone did not induce any appreciable abnormality in the mouse liver, co-expression with AKT triggered cholangiocarcinogenesis and mice had to be euthanized by 15 weeks post-injection. At the molecular level, a strong induction of Fbxw7 canonical targets, including Yap, Notch2, and c-Myc oncoproteins, was detected. However, only c-MYC was consistently confirmed as a FBXW7 target in human CCA cell lines. Most importantly, selected ablation of c-Myc completely impaired iCCA formation in AKT/Fbxw7ΔF mice, whereas deletion of either Yap or Notch2 only delayed tumorigenesis in the same model. In human iCCA specimens, an inverse correlation between the expression levels of FBXW7 and c-MYC transcriptional activity was observed. CONCLUSIONS: Downregulation of FBXW7 is ubiquitous in human iCCA and cooperates with AKT to induce cholangiocarcinogenesis in mice via c-Myc-dependent mechanisms. Targeting c-MYC might represent an innovative therapy against iCCA exhibiting low FBXW7 expression. LAY SUMMARY: There is mounting evidence that FBXW7 functions as a tumor suppressor in many cancer types, including intrahepatic cholangiocarcinoma, through its ability to promote the degradation of numerous oncoproteins. Herein, we have shown that the low expression of FBXW7 is ubiquitous in human cholangiocarcinoma specimens. This low expression is correlated with increased c-MYC activity, leading to tumorigenesis. Our findings suggest that targeting c-MYC might be an effective treatment for intrahepatic cholangiocarcinoma.

Self-efficacy and health-related quality of life: a cross-sectional study of primary care patients with multi-morbidity.

BACKGROUND: Multi-morbidity in chronic long-term conditions is a major concern for health services. Self-management in concert with clinical care forms part of the effective management of multi-morbidity. Self-efficacy is a mechanism through which self-management can be achieved. Quality of life is adversely impacted by multi-morbidity but could be improved by effective self-management. This study examines the relationship between self-efficacy and quality of life in primary care patients with multi-morbidity. METHODS: A cross-sectional survey was conducted with primary care patients in England. Potential participants were mailed a questionnaire containing quality of life measures (the EQ-5D-5L and the Long-Term Conditions Questionnaire (LTCQ)), the Disease Burden Impact Scale (DBIS) and the Self-efficacy for Managing Chronic Disease Scale. Descriptive statistics, analysis of variance and linear regression analyses were conducted to examine the relationship between quality of life (dependent variable), self-efficacy, and demographic and disease-related variables. RESULTS: The 848 participants living with multi-morbidity reported a mean of 6.46 (SD 3.49) chronic long-term conditions, with the mean number of physical conditions 5.99 (SD 3.34) and mental health conditions 0.47 (SD 0.66). The mean scores were 15.45 (SD 12.00) for disease burden, 0.69 (SD 0.28) for the EQ-5D-5L, 65.44 (SD 23.66) for the EQ-VAS, and 69.31 (SD 21.77) for the LTCQ. The mean self-efficacy score was 6.69 (SD 2.53). The regression models were all significant at p < 0.001 (adjusted R2 > 0.70). Significant factors in all models were self-efficacy, disease burden and being permanently sick or disabled. Other factors varied between models, with the most notable being the presence of a mental health condition in the LTCQ model. CONCLUSIONS: Multi-morbid primary care patients with lower self-efficacy and higher disease burden have lower quality of life. Awareness of self-efficacy levels among patients with multi-morbidity may help health professionals identify patients who are in need of enhanced self-management support. Providing self-management support for chronic disease has been hailed as a hallmark of good care. Higher self-efficacy may lead to enhanced quality of life in multi-morbidity.

Informal carers' experience of assistive technology use in dementia care at home: a systematic review.

BACKGROUND: Dementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use assistive technology. METHODS: A systematic search in seven databases and manual searches were carried out using pre-defined inclusion and exclusion criteria to identify studies on carers of persons with dementia involving the use of assistive technology. The search identified 56 publications with quantitative, qualitative and mixed-method designs. RESULTS: The studies reported positive and negative findings and focused on a wide variety of assistive technology devices. There were large differences in the uses of assistive technology, outcome measures used and the quality of studies. Knowledge and acceptance, competence to use and ethical issues when using assistive technology were themes that emerged from the studies. Carers generally appreciated using assistive technology and their experience of use varied. CONCLUSIONS: The intention of this systematic review is to list and classify the various types of assistive technology used by carers of persons with dementia and explores the positive and negative aspects, knowledge, acceptance and ethical issues in the use of assistive technology by carers of persons with dementia. We recommend the use of a standard and person-centred system of classifying and naming assistive technology devices and systems and for future research efforts in assistive technology to incorporate a family/carer centred model. SYSTEMATIC REVIEW REGISTRATION: PROSPERO - CRD42017082268 .

The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long-term conditions.

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long-term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on 'self-management', focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long-term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political-economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.

Reducing demand for antibiotic prescriptions: evidence from an online survey of the general public on the interaction between preferences, beliefs and information, United Kingdom, 2015.

BACKGROUND: Antimicrobial resistance (AMR), a major public health threat, is strongly associated with human antibiotic consumption. Influenza-like illnesses (ILI) account for substantial inappropriate antibiotic use; patient understanding and expectations probably play an important role. AIM: This study aimed to investigate what drives patient expectations of antibiotics for ILI and particularly whether AMR awareness, risk preferences (attitudes to taking risks with health) or time preferences (the extent to which people prioritise good health today over good health in the future) play a role. METHODS: In 2015, a representative online panel survey of 2,064 adults in the United Kingdom was asked about antibiotic use and effectiveness for ILI. Explanatory variables in multivariable regression included AMR awareness, risk and time preferences and covariates. RESULTS: The tendency not to prioritise immediate gain over later reward was independently strongly associated with greater awareness that antibiotics are inappropriate for ILI. Independently, believing antibiotics were effective for ILI and low AMR awareness significantly predicted reported antibiotic use. However, 272 (39%) of those with low AMR awareness said that the AMR information we provided would lead them to ask a doctor for antibiotics more often, significantly more than would do so less often, and in contrast to those with high AMR awareness (p < 0.0001). CONCLUSION: Information campaigns to reduce AMR may risk a paradoxical consequence of actually increasing public demand for antibiotics. Public antibiotic stewardship campaigns should be tested on a small scale before wider adoption.

Treatment outcomes in schizophrenia: qualitative study of the views of family carers.

BACKGROUND: Schizophrenia is a complex, heterogeneous disorder, with highly variable treatment outcomes, and relatively little is known about what is important to patients. The aim of the study was to understand treatment outcomes informal carers perceive to be important to people with schizophrenia. METHOD: Qualitative interview study with 34 individuals and 8 couples who care for a person with schizophrenia/schizoaffective disorder. Interviews were transcribed verbatim and analysed by a thematic framework based approach. RESULTS: Carers described well-recognised outcomes of importance, alongside more novel outcomes relating to: Safety (of the patient/others); insight (e.g. into non-reality of psychotic phenomena); respite from fear, distress or pain; socially acceptable behaviour; getting out of the house; attainment of life milestones; changes in personality and/or temperament; reduction of vulnerability to stress; and several aspects of physical health. CONCLUSIONS: These findings have the potential to inform the development of patient- or carer- focused outcome measures that take into account the full range of domains that carers feel are important for patients.

The role of life context and self-defined well-being in the outcomes that matter to people with a diagnosis of schizophrenia.

OBJECTIVE: Conduct a deep exploration of the outcomes that matter to people with a diagnosis of schizophrenia and understand from their perspective how these outcomes can be achieved. SAMPLE AND METHODS: In-depth qualitative interviews were conducted with 22 people with a diagnosis of schizophrenia. Interviews were analysed using thematic frameworks, and a realist informed theories of change approach. RESULTS: Our study revealed the potential causal relationships between the context of a person's life, short-term goals and long-term outcomes. We provide a nuanced and detailed exploration of outcomes that matter for people with schizophrenia in relation to self-defined well-being. Achieving life milestones, feeling safe and outcomes related to improved physical health along with employment, a positive sense of self and psychosocial outcomes, were highly valued. For short- and long-term outcomes to be achieved, individuals required medication with minimal side-effects, cognitive behavioural therapy, family/social support and meaningful activities in their lives. Well-being was influenced by life context and short- and long-term outcomes, but in a circular nature also framed what short-term goals could be achieved. CONCLUSIONS: Working with people with a diagnosis of schizophrenia to identify and achieve better outcomes will necessitate a person-centred approach. This will require an appreciation of the relationship between the statutory and non-statutory resources that are available and a consideration of an individual's current well-being status. This approach acknowledges personal strengths and encourages ownership of goals and supports self-management.