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Objectives To evaluate the feasibility and acceptability of a primary care-based intervention for improving post-diagnostic dementia care and support (PriDem), and implementation study procedures.Design A non-randomised, mixed methods, feasibility study.Setting Seven general practices from four primary care networks (PCNs) in the Northeast and Southeast of England.Participants We aimed to recruit 80 people with dementia (PWD) and 66 carersIntervention Clinical Dementia Leads delivered a 12-month intervention in participating PCNs, to develop care systems, build staff capacity and capability, and deliver tailored care and support to PWD and carers.Outcomes Recruitment and retention rates were measured. A mixed methods process evaluation evaluated feasibility and acceptability of the intervention and study procedures. Using electronic care records, researchers extracted service use data and undertook a dementia care plan audit, preintervention and postintervention, assessing feasibility of measuring the primary implementation outcome: adoption of personalised care planning by participating general practices. Participants completed quality of life, and service use measures at baseline, 4 and 9 months.Results 60 PWD (75% of recruitment target) and 51 carers (77% of recruitment target) were recruited from seven general practices across four PCNs. Retention rate at 9 months was 70.0% of PWD and 76.5% of carers. The recruitment approach showed potential for including under-represented groups within dementia. Despite implementation challenges, the intervention was feasible and acceptable, and showed early signs of sustainability. Study procedures were feasible and accessible, although researcher capacity was crucial. Participants needed time and support to engage with the study. Care plan audit procedures were feasible and acceptable.Conclusions The PriDem model is an acceptable and feasible intervention. A definitive study is warranted to fully inform dementia care policy and personalised dementia care planning guidance. Successful strategies to support inclusion of PWD and their carers in future research were developed.Trial registration number ISRCTN11677384.

Objectives Provision of personalised care planning is a national priority for people with dementia. Research suggests a lack of quality and consistency of care plans and reviews. The PriDem model of care was developed to deliver feasible and acceptable primary care-based postdiagnostic dementia care. We aimed to increase the adoption of personalised care planning for people with dementia, exploring implementation facilitators and barriers.Design Mixed-method feasibility and implementation study.Setting Seven general practices from four primary care networks (PCNs) in the Northeast and Southeast of England.Participants A medical records audit collected data on 179 community-dwelling people with dementia preintervention, and 215 during the intervention year. The qualitative study recruited 26 health and social care professionals, 14 people with dementia and 16 carers linked to participating practices.Intervention Clinical dementia leads (CDL) delivered a 12-month, systems-level intervention in participating PCNs, to develop care systems, build staff capacity and capability, and deliver tailored care and support to people with dementia and their carers.Primary and secondary outcome measures Adoption of personalised care planning was assessed through a preintervention and postintervention audit of medical records. Implementation barriers and facilitators were explored through semistructured qualitative interviews and non-participant observation, analysed using codebook thematic analysis informed by Normalisation Process Theory.Results The proportion of personalised care plans increased from 37.4% (95% CI 30.3% to 44.5%) preintervention to 64.7% (95% CI 58.3% to 71.0%) in the intervention year. Qualitative findings suggest that the flexible nature of the PriDem intervention enabled staff to overcome contextual barriers through harnessing the skills of the wider multidisciplinary team, delivering increasingly holistic care to patients.Conclusions Meaningful personalised care planning can be achieved through a team-based approach. Although improved guidelines for care planning are required, commissioners should consider the benefits of a CDL-led approach.Trial registration number ISRCTN11677384.

Abstract Background Acute hospital wards can be difficult places for many people living with dementia. Promoting comfort and wellbeing can be challenging in this environment. There is little evidence‐based support for professionals working on acute care wards on how to respond to distress and maximise comfort and wellbeing among patients living with dementia. Objectives Our overall aim was to codesign an evidence‐based easy‐to‐use heuristic decision‐support framework, which was acceptable and practical but acknowledges the complex and acute nature of caring for patients with dementia in the hospital. This paper presents the development process and resulting framework. Methods A codesign study was informed by data from (1) a literature review of the care and management of people living with dementia in acute hospitals; (2) a cohort study of comfort and discomfort in people with dementia in acute hospitals; and (3) interviews with family carers and health care professionals. We synthesised evidence from these data sources and presented to key stakeholders through codesign meetings and workshops to produce our decision‐support framework. Results The framework consists of a series of flowcharts and operates using a three‐stage process of: (1) assess comfort/discomfort; (2) consider causes of discomfort; and (3) address patient needs to manage the discomfort. Conclusion Working with key stakeholders, synthesising diverse quantitative and qualitative evidence to build a clinical framework is a feasible approach to help address the needs of patients living with dementia in an acute hospital setting. The result is a framework which is now ready for evaluation and implementation. Patient and Public Contribution We worked closely with people living with dementia and family carers throughout this study, including the development of the study protocol with input on study development and design, through to inclusion in stakeholder workshops and codesign of the decision support framework.

Abstract Background Dementia leads to multiple issues including difficulty in communication and increased need for care and support. Discussions about the future often happen late or never, partly due to reluctance or fear. In a sample of people living with dementia and carers, we explored their views and perceptions of living with the condition and their future. Methods Semi-structured interviews were conducted in 2018-19 with 11 people living with dementia and six family members in England. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. Results Findings were explored critically within the theory of social death and three themes were developed: (1) loss of physical and cognitive functions, (2) loss of social identity, and (3) social connectedness. Most participants living with dementia and carers wanted to discuss the present, rather than the future, believing a healthy lifestyle would prevent the condition from worsening. Those with dementia wanted to maintain control of their lives and demonstrated this by illustrating their independence. Care homes were often associated with death and loss of social identity. Participants used a range of metaphors to describe their dementia and the impact on their relationships and social networks. Conclusion Focusing on maintaining social identity and connectedness as part of living well with dementia may assist professionals in undertaking advance care planning discussions.

Introduction Care is often inadequate and poorly integrated after a dementia diagnosis. Research and policy highlight the unaffordability and unsustainability of specialist-led support, and instead suggest a task-shared model, led by primary care. This study is part of the PriDem primary care led postdiagnostic dementia care research programme and will assess delivery of an evidence-informed, primary care based, person-centred intervention. The intervention involves Clinical Dementia Leads (CDLs) working in primary care to develop effective dementia care systems that build workforce capacity and support teams to deliver tailored support to people living with dementia and their carers.Methods and analysis This is a 15-month mixed-methods feasibility and implementation study, situated in four National Health Service (NHS) primary care networks in England. The primary outcome is adoption of personalised care planning by participating general practices, assessed through a patient records audit. Feasibility outcomes include recruitment and retention; appropriateness and acceptability of outcome measures; acceptability, feasibility and fidelity of intervention components. People living with dementia (n=80) and carers (n=66) will be recruited through participating general practices and will complete standardised measures of health and well-being. Participant service use data will be extracted from electronic medical records. A process evaluation will explore implementation barriers and facilitators through methods including semistructured interviews with people living with dementia, carers and professionals; observation of CDL engagement with practice staff; and a practice fidelity log. Process evaluation data will be analysed qualitatively using codebook thematic analysis, and quantitatively using descriptive statistics. Economic analysis will determine intervention cost-effectiveness.Ethics and dissemination The study has received favourable ethical opinion from Wales REC4. NHS Confidentiality Advisory Group support allows researchers preconsent access to patient data. Results will inform intervention adaptations and a future large-scale evaluation. Dissemination through peer-review journals, engagement with policy-makers and conferences will inform recommendations for dementia services commissioning.Trial registration number ISRCTN11677384.

Abstract Introduction COVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed. Objectives To coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond. Methods Semi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads. Results The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking. Conclusions Combining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations. Patient or Public Contribution We worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.

IntroductionWe aimed to investigate ethnic differences in the associations of potentially modifiable risk factors with dementia.MethodsWe used anonymised data from English electronic primary care records for adults aged 65 and older between 1997 and 2018. We used Cox regression to investigate main effects for each risk factor and interaction effects between each risk factor and ethnicity.ResultsWe included 865,674 people with 8,479,973 person years of follow up. Hypertension, dyslipidaemia, obesity and diabetes were more common in people from minority ethnic groups than White people. The impact of hypertension, obesity, diabetes, low HDL and sleep disorders on dementia risk was increased in South Asian people compared to White people. The impact of hypertension was greater in Black compared to White people.DiscussionDementia prevention efforts should be targeted towards people from minority ethnic groups and tailored to risk factors of particular importance.

BackgroundThe need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers.MethodsWe used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners.Results142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support.ConclusionThe Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally.

Abstract Background Family carers of people living with dementia often need support with making decisions about care. Many find end‐of‐life care decisions particularly difficult. The aim of this article is to present an evidence‐ and theoretical‐based process for developing a decision aid to support family carers of people with dementia towards the end‐of‐life. Methods Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision‐Making model. Results The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well‐being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion This is the first decision aid that focusses on multiple decisions towards the end‐of‐life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.

Abstract Background The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. Methods We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. Results People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. Conclusions Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.

Abstract Background Syndemic theory highlights the potential for health problems to interact synergistically, compounding impact. Young adults not in education, employment or training (NEET) are more likely to experience disadvantage and poorer general health outcomes. However, there is little research on their sexual health, or the extent to which this clusters with mental and physical health outcomes. Methods Analysis of data from 16 to 24 year olds (1729 men, 2140 women) interviewed 2010–12 for Britain’s third National Survey of Sexual Attitudes and Lifestyles. Natsal-3 is a national probability sample survey using computer-assisted personal interviewing with computer-assisted self-interviewing. Participants were classified as workers, students or NEET. We used multivariable logistic regression to examine associations between being NEET (relative to worker or student) and risk behaviours and outcomes in physical, sexual and mental health domains. We then examined how risk behaviours and poor health outcomes cluster within and across domains. Results 15% men and 20% women were NEET; 36% men and 32% women were workers; and 49% men and 48% women were students. Young people who were NEET were more likely to report smoking and drug use (men) than other young people. There were few differences in sexual health, although NEETs were more likely to report condomless sex, and NEET women, unplanned pregnancy (past year). Risk behaviours clustered more within and across domains for NEET men. Among NEET women, poor health outcomes clustered across mental, physical and sexual health domains. Conclusions Harmful health behaviours (men) and poor health outcomes (women) clustered more in those who are NEET. This points to a possible syndemic effect of NEET status on general ill health, especially for women. Our paper is novel in highlighting that elevated risk pertains to sexual as well as mental and physical health.

Abstract Background Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4–User testing: interviews with caregivers testing the prototype website. Results Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. Conclusions This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.

Abstract Background Chlamydia is a major public health concern, with high economic and social costs. In 2016, there were over 200,000 chlamydia diagnoses made in England. The highest prevalence rates are found among young people. Although annual testing for sexually active young people is recommended, many do not receive testing. General practice is one ideal setting for testing, yet attempts to increase testing in this setting have been disappointing. The Capability, Opportunity, and Motivation Model of Behaviour (COM-B model) may help improve understanding of the underpinnings of chlamydia testing. The aim of this systematic review was to (1) identify barriers and facilitators to chlamydia testing for young people and primary care practitioners in general practice and (2) map facilitators and barriers onto the COM-B model. Methods Qualitative, quantitative, and mixed methods studies published after 2000 were included. Seven databases were searched to identify peer-reviewed publications which examined barriers and facilitators to chlamydia testing in general practice. The quality of included studies was assessed using the Critical Appraisal Skills Programme. Data (i.e., participant quotations, theme descriptions, and survey results) regarding study design and key findings were extracted. The data was first analysed using thematic analysis, following this, the resultant factors were mapped onto the COM-B model components. All findings are reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Results Four hundred eleven papers were identified; 39 met the inclusion criteria. Barriers and facilitators were identified at the patient (e.g., knowledge), provider (e.g., time constraints), and service level (e.g., practice nurses). Factors were categorised into the subcomponents of the model: physical capability (e.g., practice nurse involvement), psychological capability (e.g.: lack of knowledge), reflective motivation (e.g., beliefs regarding perceived risk), automatic motivation (e.g., embarrassment and shame), physical opportunity (e.g., time constraints), social opportunity (e.g., stigma). Conclusions This systematic review provides a synthesis of the literature which acknowledges factors across multiple levels and components. The COM-B model provided the framework for understanding the complexity of chlamydia testing behaviour. While we cannot at this juncture state which component represents the most salient influence on chlamydia testing, across all three levels, multiple barriers and facilitators were identified relating psychological capability and physical and social opportunity. Implementation should focus on (1) normalisation, (2) communication, (3) infection-specific information, and (4) mode of testing. In order to increase chlamydia testing in general practice, a multifaceted theory- and evidence-based approach is needed. Trial registration PROSPERO CRD42016041786

Introduction HIV pre-exposure prophylaxis (PrEP) is an effective intervention to reduce acquisition of HIV. PrEP provision has increased in recent years, however, it is not known whether PrEP implementation has been equitably implemented across all risk groups, particularly groups experiencing high levels of health inequity. A PrEP care continuum (PCC) has been proposed to evaluate the success of PrEP implementation programmes, but the extent to which health equity characteristics are currently taken into account in the PCC has not been described. The objectives of this proposed systematic review are to (i) identify and collate outcome measure definitions for the main stages of the PCC (awareness, acceptability, uptake, adherence and retention), (ii) describe how equity characteristics are considered in outcome definitions of the PCC and (iii) describe data sources for capturing equity characteristics.Methods and analysis Quantitative studies published between 1 January 2012 and 3 March 2020 will be included. Five databases (MEDLINE, PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature, Applied Social Sciences Index and Abstracts) will be searched to identify English language publications that include an outcome measure definition of at least one of the five main stages of the PCC. Risk of bias will be assessed using the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies. Data on outcome measure definitions and equity characteristics will be extracted. Results will be presented in a narrative synthesis and all findings will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Ethics and dissemination Ethical approval is not required. The results will be disseminated via submission for publication to a peer-reviewed journal when complete. The review findings will have relevance to healthcare professionals, policymakers and commissioners in informing how to best evaluate PrEP implementation programmes and inform new implementation strategies for vulnerable and less advantaged populations.PROSPERO registration number CRD42020169779.

Background: An unplanned hospital admission of a nursing home resident distresses the person, their family and nursing home staff, and is costly to the NHS. Improving health care in care homes, including early detection of residents’ health changes, may reduce hospital admissions. Previously, we identified four conditions associated with avoidable hospital admissions. We noted promising ‘within-home’ complex interventions including care pathways, knowledge and skills enhancement, and implementation support. Objectives: Develop a complex intervention with implementation support [the Better Health in Residents in Care Homes with Nursing (BHiRCH-NH)] to improve early detection, assessment and treatment for the four conditions. Determine its impact on hospital admissions, test study procedures and acceptability of the intervention and implementation support, and indicate if a definitive trial was warranted. Design: A Carer Reference Panel advised on the intervention, implementation support and study documentation, and engaged in data analysis and interpretation. In workstream 1, we developed a complex intervention to reduce rates of hospitalisation from nursing homes using mixed methods, including a rapid research review, semistructured interviews and consensus workshops. The complex intervention comprised care pathways, approaches to enhance staff knowledge and skills, implementation support and clarity regarding the role of family carers. In workstream 2, we tested the complex intervention and implementation support via two work packages. In work package 1, we conducted a feasibility study of the intervention, implementation support and study procedures in two nursing homes and refined the complex intervention to comprise the Stop and Watch Early Warning Tool (S&W), condition-specific care pathways and a structured framework for nurses to communicate with primary care. The final implementation support included identifying two Practice Development Champions (PDCs) in each intervention home, and supporting them with a training workshop, practice development support group, monthly coaching calls, handbooks and web-based resources. In work package 2, we undertook a cluster randomised controlled trial to pilot test the complex intervention for acceptability and a preliminary estimate of effect. Setting: Fourteen nursing homes allocated to intervention and implementation support (n = 7) or treatment as usual (n = 7). Participants: We recruited sufficient numbers of nursing homes (n = 14), staff (n = 148), family carers (n = 95) and residents (n = 245). Two nursing homes withdrew prior to the intervention starting. Intervention: This ran from February to July 2018. Data sources: Individual-level data on nursing home residents, their family carers and staff; system-level data using nursing home records; and process-level data comprising how the intervention was implemented. Data were collected on recruitment rates, consent and the numbers of family carers who wished to be involved in the residents’ care. Completeness of outcome measures and data collection and the return rate of questionnaires were assessed. Results: The pilot trial showed no effects on hospitalisations or secondary outcomes. No home implemented the intervention tools as expected. Most staff endorsed the importance of early detection, assessment and treatment. Many reported that they ‘were already doing it’, using an early-warning tool; a detailed nursing assessment; or the situation, background, assessment, recommendation communication protocol. Three homes never used the S&W and four never used care pathways. Only 16 S&W forms and eight care pathways were completed. Care records revealed little use of the intervention principles. PDCs from five of six intervention homes attended the training workshop, following which they had variable engagement with implementation support. Progression criteria regarding recruitment and data collection were met: 70% of homes were retained, the proportion of missing data was

BackgroundMany people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process.AimExplore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care.MethodsSemi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia.ResultsParticipants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes.ConclusionsThe modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.

Background: Effective use of contraception can reduce numbers of unintended pregnancies, but misunderstandings and concerns about contraception abound. Increasingly, women seek health-care information online. Objectives: To develop an interactive website to aid informed choice of contraceptive method, including long-acting reversible contraception (Phase I), and test its effectiveness in a parallel, single-blind randomised trial (Phase II). Approval came from London – Camden & King’s Cross Research Ethics Committee (reference 17/LO/0112). Setting and participants: For both phases, women aged 15–30 years were recruited from general practice, sexual health services, maternity services, community pharmacies and an abortion service. Design: In Phase I, we conducted three systematic literature reviews, a review of YouTube (YouTube, LLC, San Bruno, CA, USA) videos about contraception, and focus groups and interviews with young women to explore barriers to and concerns and misperceptions about contraception. We then iteratively co-designed an interactive website, Contraception Choices [URL: www.contraceptionchoices.org (accessed June 2020)], with young women and a software company. In Phase II, we evaluated the website through a randomised trial that began as a feasibility trial. Early demand for Contraception Choices stimulated a design change from a feasibility to an efficacy trial, with follow-up for clinical outcomes at 3 and 6 months. A randomisation list was incorporated into the trial software program to allocate participants to the intervention (website) or control group (standard care). Intervention: Contraception Choices is a co-designed, evidence-based, interactive website to aid informed choice of contraception. It provides information about different methods, addresses common concerns and offers tailored contraceptive options in response to individual preferences. Main outcome measures: Qualitative – participant views and experience of the intervention, assessed through qualitative interviews. Quantitative primary outcomes – follow-up rate at 6 months in the initial feasibility trial, using a long-acting reversible contraception method, and satisfaction with contraceptive method at 6 months in the efficacy trial. Results: A total of 927 women were randomised online to the website (n = 464) or control group (n = 463), of whom 739 (80%) provided follow-up data at 6 months [786 women (85%) provided data at 3 and/or 6 months that were included in the analysis of primary outcomes]. There was little difference between groups in the proportion using long-acting reversible contraception at 6 months [30.4% intervention vs. 31.0% control, adjusted odds ratio after imputation 0.87 (95% confidence interval 0.60 to 1.27)] or in satisfaction with contraceptive method [proportion being ‘satisfied’ or ‘very satisfied’, 82.6% intervention vs. 82.1% control, adjusted odds ratio 0.93 (95% confidence interval 0.69 to 1.25)]. Qualitative evaluation indicated highly positive views about the website and increased knowledge of contraceptive methods that could dispel misperceptions. Women appreciated having information tailored to their specific needs and felt better prepared before consultations. Limitations: We did not include intermediate measures, such as knowledge of contraceptive methods, intention to change method or confidence in discussing contraception with a health-care professional, which may have indicated other benefits of using the website. In future, the website should be studied in different settings (e.g. schools and in routine practice) to see whether or not it improves the quality or efficiency of contraceptive consultations. Conclusions: Our systematic review indicated wide-ranging influences on women’s use of contraception globally. The website, Contraception Choices, was very popular with young women and contraception service providers. It was not associated with statistically significant differences in use of long-acting reversible contraception or satisfaction with contraceptive method at 6 months. Trial registration: Current Controlled Trials ISRCTN13247829. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 56. See the NIHR Journals Library website for further project information.

Objectives We describe temporal trends in the recorded incidence of inflammatory bowel disease (IBD) in UK primary care patients between 2000 and 2018.Design A cohort study.Setting The IQVIA Medical Research data (IMRD) primary care database.Participants All individuals registered with general practices contributing to IMRD during the period 01 January 2000–31 December 2018.Main outcome measures The primary outcome was the recorded diagnosis of IBD.Results 11 325 025 individuals were included and 65 700 IBD cases were identified, of which 22 560 were incident diagnoses made during the study period. Overall, there were 8077 incident cases of Crohn’s disease (CD) and 12 369 incident cases of ulcerative colitis (UC). Crude incidence estimates of ‘IBD overall’, CD and UC were 28.6 (28.2 to 28.9), 10.2 (10.0 to 10.5) and 15.7 (15.4 to 15.9)/100 000 person years, respectively. No change in IBD incidence was observed for adults aged 17–40 years and children aged 0–9 years. However, for adults aged over 40 years, incidence fell from 37.8 (34.5 to 41.4) to 23.6 (21.3 to 26.0)/100 000 person years (average decrease 2.3% (1.9 to 2.7)/year (p

Objective Improving use of effective contraception to prevent unintended pregnancy is a global priority, but misperceptions and concerns about contraception are common. Our objective was to evaluate an interactive website to aid informed choice of contraception. Methods The Contraception Choices website is an interactive digital intervention which offers tailored advice to aid contraception decision-making ( www.contraceptionchoices.org ). In a parallel single-blind trial, we randomised 927 women aged 15–30 years from six clinic settings to access the intervention website (n = 464) or to a waiting-list control group (n = 463). The study was initially a feasibility trial, evolving into an evaluation of efficacy, with two primary outcomes at six months: long-acting reversible contraception (LARC) use, and satisfaction with contraceptive method. Secondary outcomes included self-reported pregnancy and sexually transmitted infection diagnoses. Free-text comments on the 3 and 6 month outcome surveys were analysed thematically. Findings There was no significant difference between intervention and control groups in the proportion of women using LARC [30.4% intervention versus 31.0% control; adjusted odds ratio 0.87 (95% confidence interval 0.60 to 1.28)]; satisfaction with contraceptive method [82.6% versus 82.1%; adjusted ordinal odds ratio 0.93 (95% CI 0.69 to 1.25)]; self-reported pregnancy [3.3% versus 4.1%; adjusted odds ratio 0.90 (95% CI 0.45 to 1.79)] nor sexually transmitted infection [5.3% versus 4.7%; adjusted odds ratio 0.72 (95% CI 0.55 to 2.36)]. Highly positive free-text comments from intervention participants indicated that the website facilitates contraception choice and can help women feel better prepared before consultation with healthcare providers. Interpretation The Contraception Choices website was popular for its design, trustworthy information and decision aids but it was not associated with significant differences in use of LARC or satisfaction with contraceptive method. An interactive website can aid contraception choice, but interventions that address factors beyond women’s control, such as access to services, and partner, family or community influences are needed to complement this approach. Research in context Preventing unintended pregnancy through effective use of contraception is essential for women’s health, but choosing between different contraceptive methods can be challenging, and the opportunity for adequate discussion during routine consultations is often constrained. Evidence before this study We conducted two systematic literature reviews: 1) Factors influencing contraception choice, uptake and use: a meta-synthesis of systematic reviews; and 2) Effectiveness of interactive digital interventions (IDI) for contraception choice, uptake and use. For the first review we searched PubMed, CDSR, Epistemonikos, DoPHER, DARE, NHS Economic Evaluation Database, Campbell Library, NIHR Health Technology Assessment, and Health Evidence Canada databases for systematic reviews which addressed contraceptive choice, uptake or use, from 2000 to 2017. PROSPERO registration number: CRD42017081521 https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=81521 . We synthesised the findings of 18 systematic reviews of mostly moderate or high quality. They highlighted the importance of women’s knowledge, beliefs, perceptions of side effects and health risks, as well as relationship status, social network, economic and healthcare factors on contraception choice and use. For the second review, we searched 23 electronic databases, trials registers and reference lists for randomised controlled trials of IDI for contraception, including CENTRAL, MEDLINE, EMBASE, CINAHL, ERIC, ASSIA and PsycINFO, from start date to June 2017. PROSPERO registration number: CRD42017081636. We found only five randomised trials of IDI, all from the USA. Risk of bias prevented synthesis of results. www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=81636 . Added value of this study Women’s common concerns about contraception – fear of hormones, weight gain, cancer, infertility, mood changes, breaks from contraception and changes in bleeding patterns – underpinned development of a new interactive website ( www.contraceptionchoices.org ). Contraception Choices addresses women’s concerns through succinct text; Q and A format ( Frequently Asked Questions , Did you Know? ; videos of women and health professionals); an effectiveness infographic, and an interactive decision aid ( What’s right for me? ). In an online randomised trial with 927 women attending clinics, we found no association of the Contraception Choices intervention with the primary outcomes – satisfaction with contraceptive method and uptake of long-acting reversible methods at 6 months. Nor did we find an association with secondary adverse outcomes – sexually transmitted infections or pregnancy. Comments from women indicated that the website can meet young women’s need for information on the benefits and drawbacks of contraception, help them to make informed decisions, and feel better prepared before healthcare consultations. Contraception Choices is now available on the NHS website: www.nhs.uk/conditions/contraception/which-method-suits-me Implications of all the available evidence Interactive digital interventions (websites) can aid contraception choice, but other intervention research is needed to address wider influences on unintended pregnancy, including partner views, friends, family, the media, wider society and experiences with healthcare professionals. Future research could examine the impact of the website in different settings, e.g. schools or different countries. We hypothesise that use of the website during contraceptive consultations might improve the efficiency or quality of consultation, for both patients and healthcare providers. Appropriate methodology and time-scale for evaluating digital health interventions remains a key question.

ObjectiveWe examined the association between frailty and disability in rural community-dwelling older adults in Kegalle district of Sri Lanka.DesignA population-based cross-sectional study.ParticipantsA total of 746 community-dwelling adults aged ≥60 years.Primary and secondary outcome measuresFrailty was assessed using the Fried phenotype. Disability was operationalised in terms of having one or more activity limitation/s in instrumental activities of daily living (IADL) and basic activities of daily living (BADL).ResultsThe median age of the sample was (median 68; IQR 64–75) years and 56.7% were female. 15.2% were frail and 48.5% were prefrail. The prevalence of ≥1 IADL limitations was high, 84.4% among frail adults. 38.7% of frail adults reported ≥1 BADL limitations. Over half of frail older adults (58.3%) reported both ≥1 physical and cognitive IADL limitations. Being frail decreased the odds of having no IADL limitations, and was associated with a higher count of IADL limitations. No significant association was found between prefrailty and number of IADL limitations.ConclusionsThe prevalence of ≥1 IADL limitations was high among rural community-dwelling frail older adults. Findings imply the greater support and care required for rural Sri Lankan frail older adults to live independently in the community.

Abstract Background Health care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models. Methods Iterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included. Results We included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM. Conclusions To embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.

Abstract Background The presence of concomitant medical conditions in people with dementia is common. Dementia may be related to differential use of health, social and informal care. Methods Data from two large UK population-based studies (CFAS I & II) of adults aged 65 years and older were analysed using logistic regression for binary outcomes and Poisson regression for count outcomes to look at differences in non-dementia service use by those with dementia and a health condition in comparison to those with the health condition alone. Results A total of 1619 individuals from CFAS I and 3805 individuals from CFAS II over the age of 75 years were included in this analysis. The presence of dementia and either stroke, diabetes or visual impairment tended to increase the likelihood of a range of different services being used over having any of the health conditions alone. There has been a shift to the use of unpaid care over time. There is now increased use of unpaid care from friends and family by those with dementia and another health condition in comparison to the health condition alone. Conclusions Either due to the decrease in care home spaces or affordability, people with dementia are now relying on unpaid care more than people with other long-term health conditions.

Abstract Background Dementia and diabetes mellitus are common long-term conditions and co-exist in a large number of older people. People living with dementia (PLWD) may be less able to manage their diabetes, putting them at increased risk of complications such as hypoglycaemia. The aim of this review was to identify key mechanisms within different interventions that are likely to improve diabetes outcomes in PLWD. Methods This is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories and their validation with a purposive sample of stakeholders. Twenty-six stakeholders — user/patient representatives, dementia care providers, clinicians specialising in diabetes or dementia and researchers — took part in interviews, and 24 participated in a consensus conference. Results We included 89 papers. Ten focused on PLWD and diabetes, and the remainder related to people with either dementia, diabetes or other long-term conditions. We identified six context-mechanism-outcome configurations which provide an explanatory account of how interventions might work to improve the management of diabetes in PLWD. This includes embedding positive attitudes towards PLWD, person-centred approaches to care planning, developing skills to provide tailored and flexible care, regular contact, family engagement and usability of assistive devices. An overarching contingency emerged concerning the synergy between an intervention strategy, the dementia trajectory and social and environmental factors, especially family involvement. Conclusions Evidence highlighted the need for personalised care, continuity and family-centred approaches, although there was limited evidence that this happens routinely. This review suggests there is a need for a flexible service model that prioritises quality of life, independence and patient and carer priorities. Future research on the management of diabetes in older people with complex health needs, including those with dementia, needs to look at how organisational structures and workforce development can be better aligned to their needs. Trial registration PROSPERO, CRD42015020625. Registered on 18 May 2015.

Background: Timely diagnosis of human immunodeficiency virus (HIV) enables access to antiretroviral treatment, which reduces mortality, morbidity and further transmission in people living with HIV. In the UK, late diagnosis among black African people persists. Novel methods to enhance HIV testing in this population are needed. Objectives: To develop a self-sampling kit (SSK) intervention to increase HIV testing among black Africans, using existing community and health-care settings (stage 1) and to assess the feasibility for a Phase III evaluation (stage 2). Design: A two-stage, mixed-methods design. Stage 1 involved a systematic literature review, focus groups and interviews with key stakeholders and black Africans. Data obtained provided the theoretical base for intervention development and operationalisation. Stage 2 was a prospective, non-randomised study of a provider-initiated, HIV SSK distribution intervention targeted at black Africans. The intervention was assessed for cost-effectiveness. A process evaluation explored feasibility, acceptability and fidelity. Setting: Twelve general practices and three community settings in London. Main outcome measure: HIV SSK return rate. Results: Stage 1 – the systematic review revealed support for HIV SSKs, but with scant evidence on their use and clinical effectiveness among black Africans. Although the qualitative findings supported SSK distribution in settings already used by black Africans, concerns were raised about the complexity of the SSK and the acceptability of targeting. These findings were used to develop a theoretically informed intervention. Stage 2 – of the 349 eligible people approached, 125 (35.8%) agreed to participate. Data from 119 were included in the analysis; 54.5% (65/119) of those who took a kit returned a sample; 83.1% of tests returned were HIV negative; and 16.9% were not processed, because of insufficient samples. Process evaluation showed the time pressures of the research process to be a significant barrier to feasibility. Other major barriers were difficulties with the SSK itself and ethnic targeting in general practice settings. The convenience and privacy associated with the SSK were described as beneficial aspects, and those who used the kit mostly found the intervention to be acceptable. Research governance delays prevented implementation in Glasgow. Limitations: Owing to the study failing to recruit adequate numbers (the intended sample was 1200 participants), we were unable to evaluate the clinical effectiveness of SSKs in increasing HIV testing in black African people. No samples were reactive, so we were unable to assess pathways to confirmatory testing and linkage to care. Conclusions: Our findings indicate that, although aspects of the intervention were acceptable, ethnic targeting and the SSK itself were problematic, and scale-up of the intervention to a Phase III trial was not feasible. The preliminary economic model suggests that, for the acceptance rate and test return seen in the trial, the SSK is potentially a cost-effective way to identify new infections of HIV. Future work: Sexual and public health services are increasingly utilising self-sampling technologies. However, alternative, user-friendly SSKs that meet user and provider preferences and UK regulatory requirements are needed, and additional research is required to understand clinical effectiveness and cost-effectiveness for black African communities. Study registration: This study is registered as PROSPERO CRD42014010698 and Integrated Research Application System project identification 184223. Funding: The National Institute for Health Research Health Technology Assessment programme and the BHA for Equality in Health and Social Care.

ObjectiveTo investigate trends in the incidence of imported malaria in the UK between 2005 and 2016.DesignAnalysis of longitudinal electronic health records (EHRs) in The Health Improvement Network (THIN) primary care database.SettingUK primary care.ParticipantsIn total, we examined 12,349,003 individuals aged 0 to 99 years.Outcome measureThe rate of malaria recordings in THIN was calculated per year between 2005 and 2016. Rate ratios exploring differences by age, sex, location of general practice, socioeconomic status and ethnicity were estimated using multivariable Poisson regression.ResultsA total of 1,474 individuals with a first diagnosis of malaria were identified in THIN between 2005 and 2016. The incidence of recorded malaria followed a decreasing trend dropping from a rate of 3.33 in 2005 to 1.36 cases per 100,000 person years at risk in 2016. Multivariable Poisson regression showed that adults of working age (20 to 69 years), men, those registered with a general practice in London, higher social deprivation and non-white ethnicity were associated with higher rates of malaria recordings.ConclusionThere has been a decrease in the number of malaria recordings in UK primary care over the past decade. This decrease exceeds the rate of decline reported in national surveillance data; however there are similar associations with age, sex and deprivation. Improved geographic information on the distribution of cases and the potential for automation of case identification suggests that EHRs could provide a complementary role for investigating malaria trends over time.

INTRODUCTION:Instrumental activities of daily living (IADL) are cognitively complex activities related to independent living in the community. Robust IADL scales are needed, however the psychometric properties of instruments have been little evaluated. There is no validated instrument for Sri Lankan older populations. Sri Lanka has the highest proportion of older people in South Asia with rapid population ageing. Therefore, it is essential to have standard instruments to assess activity limitations. We aimed to cross-culturally adapt the original Lawton Instrumental Activities of Daily Living Scale from English to Sinhala and evaluate the psychometric properties of the Sinhala version. METHODS:Cross-cultural adaptation of the instrument was performed. The instrument was validated in a sample of 702 community-dwelling older adults aged 60 years and above in Sri Lanka. Reliability (internal consistency and inter-rater reliability) was assessed. Construct validity of the scale was evaluated by performing exploratory and confirmatory factor analysis and testing convergent and divergent validity. RESULTS:The Lawton IADL scale was successfully adapted to Sri Lankan context. Internal consistency of the scale was very high (Cronbach's alpha = 0.91). Very good inter-rater reliability was observed with very good agreement for all items. Inter-class correlations for overall IADL score ranged from 0.57 to 0.91. Results of the exploratory and confirmatory factor analyses supported the unidimensionality of the scale. Goodness of fit indices in confirmatory factor analysis were in acceptable range (CFI = 0.98, SRMR = 0.06, NNFI = 0.97). Strength of associations were significant and in the expected direction. Results of the known group validity were also significant, confirming the convergent and divergent validity. CONCLUSION:The Lawton IADL scale was successfully translated and culturally adapted to Sinhala language. The Sinhala version demonstrated excellent reliability and construct validity. Given good psychometric properties, this scale would be recommended for use in future research.

Background: Dementia and diabetes mellitus are common long-term conditions that coexist in a large number of older people. People living with dementia and diabetes may be at increased risk of complications such as hypoglycaemic episodes because they are less able to manage their diabetes. Objectives: To identify the key features or mechanisms of programmes that aim to improve the management of diabetes in people with dementia and to identify areas needing further research. Design: Realist review, using an iterative, stakeholder-driven, four-stage approach. This involved scoping the literature and conducting stakeholder interviews to develop initial programme theories, systematic searches of the evidence to test and develop the theories, and the validation of programme theories with a purposive sample of stakeholders. Participants: Twenty-six stakeholders (user/patient representatives, dementia care providers, clinicians specialising in dementia or diabetes and researchers) took part in interviews and 24 participated in a consensus conference. Data sources: The following databases were searched from 1990 to March 2016: MEDLINE (PubMed), Cumulative Index to Nursing and Allied Health Literature, Scopus, The Cochrane Library (including the Cochrane Database of Systematic Reviews), Database of Abstracts of Reviews of Effects, the Health Technology Assessment (HTA) database, NHS Economic Evaluation Database, AgeInfo (Centre for Policy on Ageing – UK), Social Care Online, the National Institute for Health Research (NIHR) portfolio database, NHS Evidence, Google (Google Inc., Mountain View, CA, USA) and Google Scholar (Google Inc., Mountain View, CA, USA). Results: We included 89 papers. Ten papers focused directly on people living with dementia and diabetes, and the rest related to people with dementia or diabetes or other long-term conditions. We identified six context–mechanism–outcome (CMO) configurations that provide an explanatory account of how interventions might work to improve the management of diabetes in people living with dementia. This includes embedding positive attitudes towards people living with dementia, person-centred approaches to care planning, developing skills to provide tailored and flexible care, regular contact, family engagement and usability of assistive devices. A general metamechanism that emerges concerns the synergy between an intervention strategy, the dementia trajectory and social and environmental factors, especially family involvement. A flexible service model for people with dementia and diabetes would enable this synergy in a way that would lead to the improved management of diabetes in people living with dementia. Limitations: There is little evidence relating to the management of diabetes in people living with dementia, although including a wider literature provided opportunities for transferable learning. The outcomes in our CMOs are largely experiential rather than clinical. This reflects the evidence available. Outcomes such as increased engagement in self-management are potential surrogates for better clinical management of diabetes, but this is not proven. Conclusions: This review suggests that there is a need to prioritise quality of life, independence and patient and carer priorities over a more biomedical, target-driven approach. Much current research, particularly that specific to people living with dementia and diabetes, identifies deficiencies in, and problems with, current systems. Although we have highlighted the need for personalised care, continuity and family-centred approaches, there is much evidence to suggest that this is not currently happening. Future research on the management of diabetes in older people with complex health needs, including those with dementia, needs to look at how organisational structures and workforce development can be better aligned to the needs of people living with dementia and diabetes. Study registration: This study is registered as PROSPERO CRD42015020625. Funding: The NIHR HTA programme.

BackgroundMost people with dementia do not receive timely diagnosis, preventing them from making informed plans about their future and accessing services. Many countries have a policy to increase timely diagnosis, but trials aimed at changing general practitioner (GP) practice have been unsuccessful. We aimed to assess whether a GP's personal letter, with an evidence-based leaflet about overcoming barriers to accessing help for memory problems-aimed at empowering patients and families-increases timely dementia diagnosis and patient presentation to general practice.Methods and findingMulticentre, cluster-randomised controlled trial with raters masked to an online computer-generated randomisation system assessing 1 y outcome. We recruited 22 general practices (August 2013-September 2014) and 13 corresponding secondary care memory services in London, Hertfordshire, and Essex, United Kingdom. Eligible patients were aged ≥70 y, without a known diagnosis of dementia, living in their own homes. There were 6,387 such patients in 11 intervention practices and 8,171 in the control practices. The primary outcome was cognitive severity on Mini Mental State Examination (MMSE). Main secondary outcomes were proportion of patients consulting their GP with suspected memory disorders and proportion of those referred to memory clinics. There was no between-group difference in cognitive severity at diagnosis (99 intervention, mean MMSE = 22.04, 95% confidence intervals (CIs) = 20.95 to 23.13; 124 control, mean MMSE = 22.59, 95% CI = 21.58 to 23.6; p = 0.48). GP consultations with patients with suspected memory disorders increased in intervention versus control group (odds ratio = 1.41; 95% CI = 1.28, 1.54). There was no between-group difference in the proportions of patients referred to memory clinics (166, 2.5%; 220, 2.7%; p = .077 respectively). The study was limited as we do not know whether the additional patients presenting to GPs had objective as well as subjective memory problems and therefore should have been referred. In addition, we aimed to empower patients but did not do anything to change GP practice.ConclusionsOur intervention to access timely dementia diagnosis resulted in more patients presenting to GPs with memory problems, but no diagnoses increase. We are uncertain as to the reason for this and do not know whether empowering the public and targeting GPs would have resulted in a successful intervention. Future interventions should be targeted at both patients and GPs.Trial registrationCurrent Controlled Trials ISRCTN19216873.

Background: This report details the development of the Men’s Safer Sex website and the results of a feasibility randomised controlled trial (RCT), health economic assessment and qualitative evaluation. Objectives: (1) Develop the Men’s Safer Sex website to address barriers to condom use; (2) determine the best design for an online RCT; (3) inform the methods for collecting and analysing health economic data; (4) assess the Sexual Quality of Life (SQoL) questionnaire and European Quality of Life-5 Dimensions, three-level version (EQ-5D-3L) to calculate quality-adjusted life-years (QALYs); and (5) explore clinic staff and men’s views of online research methodology. Methods: (1) Website development: we combined evidence from research literature and the views of experts (n = 18) and male clinic users (n = 43); (2) feasibility RCT: 159 heterosexually active men were recruited from three sexual health clinics and were randomised by computer to the Men’s Safer Sex website plus usual care (n = 84) or usual clinic care only (n = 75). Men were invited to complete online questionnaires at 3, 6, 9 and 12 months, and sexually transmitted infection (STI) diagnoses were recorded from clinic notes at 12 months; (3) health economic evaluation: we investigated the impact of using different questionnaires to calculate utilities and QALYs (the EQ-5D-3L and SQoL questionnaire), and compared different methods to collect resource use; and (4) qualitative evaluation: thematic analysis of interviews with 11 male trial participants and nine clinic staff, as well as free-text comments from online outcome questionnaires. Results: (1) Software errors and clinic Wi-Fi access presented significant challenges. Response rates for online questionnaires were poor but improved with larger vouchers (from 36% with £10 to 50% with £30). Clinical records were located for 94% of participants for STI diagnoses. There were no group differences in condomless sex with female partners [incidence rate ratio (IRR) 1.01, 95% confidence interval (CI) 0.52 to 1.96]. New STI diagnoses were recorded for 8.8% (7/80) of the intervention group and 13.0% (9/69) of the control group (IRR 0.75, 95% CI 0.29 to 1.89). (2) Health-care resource data were more complete using patient files than questionnaires. The probability that the intervention is cost-effective is sensitive to the source of data used and whether or not data on intended pregnancies are included. (3) The pilot RCT fitted well around clinical activities but 37% of the intervention group did not see the Men’s Safer Sex website and technical problems were frustrating. Men’s views of the Men’s Safer Sex website and research procedures were largely positive. Conclusions: It would be feasible to conduct a large-scale RCT using clinic STI diagnoses as a primary outcome; however, technical errors and a poor response rate limited the collection of online self-reported outcomes. The next steps are (1) to optimise software for online trials, (2) to find the best ways to integrate digital health promotion with clinical services, (3) to develop more precise methods for collecting resource use data and (4) to work out how to overcome barriers to digital intervention testing and implementation in the NHS. Trial registration: Current Controlled Trials ISRCTN18649610. 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. 91. See the NIHR Journals Library website for further project information.

Background: Sexually transmitted infection (STI) diagnoses are increasing and efforts to reduce transmission have failed. There are major uncertainties in the evidence base surrounding the delivery of STI care for men. Aim: To improve the sexual health of young men in the UK by determining optimal strategies for STI testing and care Objectives: To develop an evidence-based clinical algorithm for STI testing in asymptomatic men; model mathematically the epidemiological and economic impact of removing microscopy from routine STI testing in asymptomatic men; conduct a pilot randomised controlled trial (RCT) of accelerated partner therapy (APT; new models of partner notification to rapidly treat male sex partners of people with STIs) in primary care; explore the acceptability of diverse venues for STI screening in men; and determine optimal models for the delivery of screening. Design: Systematic review of the clinical consequences of asymptomatic non-chlamydial, non-gonococcal urethritis (NCNGU); case–control study of factors associated with NCNGU; mathematical modelling of the epidemiological and economic impact of removing microscopy from asymptomatic screening and cost-effectiveness analysis; pilot RCT of APT for male sex partners of women diagnosed with Chlamydia trachomatis infection in primary care; stratified random probability sample survey of UK young men; qualitative study of men’s views on accessing STI testing; SPORTSMART pilot cluster RCT of two STI screening interventions in amateur football clubs; and anonymous questionnaire survey of STI risk and previous testing behaviour in men in football clubs. Settings: General population, genitourinary medicine clinic attenders, general practice and community contraception and sexual health clinic attenders and amateur football clubs. Participants: Men and women. Interventions: Partner notification interventions: APTHotline [telephone assessment of partner(s)] and APTPharmacy [community pharmacist assessment of partner(s)]. SPORTSMART interventions: football captain-led and health adviser-led promotion of urine-based STI screening. Main outcome measures: For the APT pilot RCT, the primary outcome, determined for each contactable partner, was whether or not they were considered to have been treated within 6 weeks of index diagnosis. For the SPORTSMART pilot RCT, the primary outcome was the proportion of eligible men accepting screening. Results: Non-chlamydial, non-gonococcal urethritis is not associated with significant clinical consequences for men or their sexual partners but study quality is poor (systematic review). Men with symptomatic and asymptomatic NCNGU and healthy men share similar demographic, behavioural and clinical variables (case–control study). Removal of urethral microscopy from routine asymptomatic screening is likely to lead to a small rise in pelvic inflammatory disease (PID) but could save > £5M over 20 years (mathematical modelling and health economics analysis). In the APT pilot RCT the proportion of partners treated by the APTHotline [39/111 (35%)], APTPharmacy [46/100 (46%)] and standard patient referral [46/102 (45%)] did not meet national standards but exceeded previously reported outcomes in community settings. Men’s reported willingness to access self-sampling kits for STIs and human immunodeficiency virus infection was high. Traditional health-care settings were preferred but sports venues were acceptable to half of men who played sport (random probability sample survey). Men appear to prefer a ‘straightforward’ approach to STI screening, accessible as part of their daily activities (qualitative study). Uptake of STI screening in the SPORTSMART RCT was high, irrespective of arm [captain led 28/56 (50%); health-care professional led 31/46 (67%); poster only 31/51 (61%)], and costs were similar. Men were at risk of STIs but previous testing was common. Conclusions: Men find traditional health-care settings the most acceptable places to access STI screening. Self-sampling kits in football clubs could widen access to screening and offer a public health impact for men with limited local sexual health services. Available evidence does not support an association between asymptomatic NCNGU and significant adverse clinical outcomes for men or their sexual partners but the literature is of poor quality. Similarities in characteristics of men with and without NCNGU precluded development of a meaningful clinical algorithm to guide STI testing in asymptomatic men. The mathematical modelling and cost-effectiveness analysis of removing all asymptomatic urethral microscopy screening suggests that this would result in a small rise in adverse outcomes such as PID but that it would be highly cost-effective. APT appears to improve outcomes of partner notification in community settings but outcomes still fail to meet national standards. Priorities for future work include improving understanding of men’s collective behaviours and how these can be harnessed to improve health outcomes; exploring barriers to and facilitators of opportunistic STI screening for men attending general practice, with development of evidence-based interventions to increase the offer and uptake of screening; further development of APT for community settings; and studies to improve knowledge of factors specific to screening men who have sex with men (MSM) and, in particular, how, with the different epidemiology of STIs in MSM and the current narrow focus on chlamydia, this could negatively impact MSM’s sexual health. Funding: The National Institute for Health Research Programme Grants for Applied Research programme.

Objectives We aimed to determine the feasibility of an online randomised controlled trial (RCT) of the Men’s Safer Sex website, measuring condom use and sexually transmitted infection (STI). Methods For this study 159 men aged ≥16 with female sexual partners and recent condomless sex or suspected STI were recruited from three UK sexual health clinics. Participants were randomised to the intervention website plus usual clinic care ( n = 84), or usual clinic care only ( n = 75). Online outcome data were solicited at 3, 6, and 12 months. Results Men were enrolled via tablet computers in clinic waiting rooms. Software errors and clinic Wi-Fi access presented significant challenges, and online questionnaire response rates were poor (36% at 3 months with a £10 voucher; 50% at 12 months with £30). Clinical records (for STI diagnoses) were located for 94% of participants. Some 37% of the intervention group did not see the intervention website ( n = 31/84), and (as expected) there was no detectable difference in condomless sex with female partners (IRR = 1.01, 95% CI 0.52 to 1.96). New acute STI diagnoses were recorded for 8.8% (7/80) of the intervention group, and 13.0% (9/69) of the control group over 12 months (IRR = 0.75, 95% CI 0.29 to 1.90). Conclusion It is likely to be feasible to conduct a future large-scale RCT to assess the impact of an online intervention using clinic STI diagnoses as a primary outcome. However, practical and technical challenges need to be addressed before the potential of digital media interventions can be realised in sexual health settings. Trial registration number: ISRCTN18649610

Background: Among people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population. Objectives: To explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population. Design: We undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care. Participants: The study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care. Results: The scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD. Conclusions: Significant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity. Funding: The National Institute for Health Research Health Services and Delivery Research programme.

Background: The needs of people with dementia and their carers are inadequately addressed at all key points in the illness trajectory, from diagnosis through to end-of-life care. The EVIDEM (Evidence-based Interventions in Dementia) research and development programme (2007–12) was designed to help change this situation within real-life settings. Objectives: The EVIDEM projects were (1) evaluation of an educational package designed to enhance general practitioners’ (GPs’) diagnostic and management skills; (2) evaluation of exercise as therapy for behavioural and psychological symptoms of dementia (BPSD); (3) development of a toolkit for managing incontinence in people with dementia living at home; (4) development of a toolkit for palliative care for people with dementia; and (5) development of practice guidance on the use of the Mental Capacity Act (MCA) 2005. Design: Mixed quantitative and qualitative methods from case studies to large database analyses, including longitudinal surveys, randomised controlled trials and research register development, with patient and public involvement built into all projects. Setting: General practices, community services, third-sector organisations and care homes in the area of the North Thames Dementia and Neurodegenerative Diseases Research Network local research network. Participants: People with dementia, their family and professional carers, GPs and community mental health team members, staff in local authority social services and third-sector bodies, and care home staff. Main outcome measures: Dementia management reviews and case identification in general practice; changes in behavioural and psychological symptoms measured with the Neuropsychiatric Inventory (NPI); extent and impact of incontinence in community-dwelling people with dementia; mapping of pathways to death of people with dementia in care homes, and testing of a model of collaborative working between primary care and care homes; and understandings of the MCA 2005 among practitioners working with people with dementia. Results: An educational intervention in general practice did not alter management or case identification. Exercise as a therapy for BPSD did not reduce NPI scores significantly, but had a significant positive effect on carer burden. Incontinence is twice as common in community-dwelling people with dementia than their peers, and is a hidden taboo within a stigma. Distinct trajectories of dying were identified (anticipated, unexpected and uncertain), and collaboration between NHS primary care and care homes was improved, with cost savings. The MCA 2005 legislation provided a useful working framework for practitioners working with people with dementia. Conclusions: A tailored educational intervention for general practice does not change practice, even when incentives, policy pressure and consumer demand create a favourable environment for change; exercise has potential as a therapy for BPSD and deserves further investigation; incontinence is a common but unrecognised problem for people with dementia in the community; changes in relationships between care homes and general practice can be achieved, with benefits for people with dementia at the end of life and for the UK NHS; application of the MCA 2005 will continue to improve but educational reinforcements will help this. Increased research capacity in dementia in the community was achieved. This study suggests that further work is required to enhance clinical practice around dementia in general practice; investigate the apparent beneficial effect of physical activity on BPSD and carer well-being; develop case-finding methods for incontinence in people with dementia; optimise working relationships between NHS staff and care homes; and reinforce practitioner understanding of the MCA 2005. Trial registration: EVIDEM: ED-NCT00866099; EVIDEM: E-ISRCTN01423159. Funding: This project was funded by the Programme Grants for Applied Research programme of the National Institute for Health Research.

There is a lack of recent studies examining recording of influenza-like illness (ILI) in primary care in the UK over time and according to population characteristics. Our aim was to determine time trends and socio-demographic patterns of ILI recorded consultations in primary care.We used The Health Improvement Network (THIN) UK primary care database and extracted data on all ILI consultations between 1995 and 2013. We estimated ILI recorded consultation rates per 100,000 person-weeks (pw) by age, gender, deprivation and winter season. Negative binomial regression models were used to examine time trends and the effect of socio-demographic characteristics. Trends in ILI recorded consultations were compared to trends in consultations with less specific symptoms (cough or fever) recorded.The study involved 7,682,908 individuals in 542 general practices. The ILI consultation rate decreased from 32.5/100,000 pw (95% confidence interval (CI) 32.1, 32.9) in 1995-98 to 15.5/100,000 pw (95% CI 15.4, 15.7) by 2010-13. The decrease occurred prior to 2002/3, and rates have remained largely stable since then. Declines were evident in all age groups. In comparison, cough or fever consultation rates increased from 169.4/100,000 pw (95% CI 168.6, 170.3) in 1995-98 to 237.7/100,000 pw (95% CI 237.2, 238.2) in 2010-13. ILI consultation rates were highest among individuals aged 15-44 years, higher in women than men, and in individuals from deprived areas.There is substantial variation in ILI recorded consultations over time and by population socio-demographic characteristics, most likely reflecting changing recording behaviour by GPs. These results highlight the difficulties in using coded information from electronic primary care records to measure the severity of influenza epidemics across time and assess the relative burden of ILI in different population subgroups.

Background: Partner notification is the process of providing support for, informing and treating sexual partners of individuals who have been diagnosed with sexually transmitted infections (STIs). It is traditionally undertaken by specialist sexual health services, and may involve informing a partner on a patient’s behalf, with consent. With an increasing proportion of STIs diagnosed in general practice and other community settings, there is a growing need to understand the best way to provide partner notification for people diagnosed with a STI in this setting using a web-based referral system. Objective: We aimed to compare three different approaches to partner notification for people diagnosed with chlamydia within general practice. Design: Cluster randomised controlled trial. Setting: General practices in England and, within these, patients tested for and diagnosed with genital chlamydia or other bacterial STIs in that setting using a web-based referral system. Interventions: Three different approaches to partner notification: patient referral alone, or the additional offer of either provider referral or contract referral. Main outcome measures: (1) Number of main partners per index patient treated for chlamydia and/or gonorrhoea/non-specific urethritis/pelvic inflammatory disease; and (2) proportion of index patients testing negative for the relevant STI at 3 months. Results: As testing rates for chlamydia were far lower than expected, we were unable to scale up the trial, which was concluded at pilot stage. We are not able to answer the original research question. We present the results of the work undertaken to improve recruitment to similar studies requiring opportunistic recruitment of young people in general practice. We were unable to standardise provider and contract referral separately; however, we also present results of qualitative work aimed at optimising these interventions. Conclusions: External recruitment may be required to facilitate the recruitment of young people to research in general practice, especially in sensitive areas, because of specific barriers experienced by general practice staff. Costs need to be taken into account together with feasibility considerations. Partner notification interventions for bacterial STIs may not be clearly separable into the three categories of patient, provider and contract referral. Future research is needed to operationalise the approaches of provider and contract partner notification if future trials are to provide generalisable information. Trial registration: Current Controlled Trials ISRCTN24160819. Funding: This project was funded by the National Institute for Health Research Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 19, No. 5. See the NIHR Journals Library website for further project information.

The UK incidence of pancreatic ductal adenocarcinoma (PDAC) is approximately 9/100,000 population compared with 1-2/100,000 for biliary tract cancer (BTC). This study explores the incidence of these cancers over time and the influence of socio-demographic and geographic factors in a UK primary care cohort.This study uses data from a large UK primary care database, The Health Improvement Network (THIN). All adult patients contributing data to THIN between January 2000 and December 2010 were included. Annual incidence rates were calculated, adjusted for age, gender, time period, deprivation score (Townsend quintile) and strategic health authority.From 2000-2010, the annual incidence of PDAC increased by an average of 3% per year (95% CI 1.00-4.00%) and BTC by 4% (95% CI 2.00-6.00%). Incidence of both cancers increased steeply with age and was higher in men. BTC was associated with increasing deprivation (most deprived versus least deprived quintile (OR: 1.45 [95% CI: 1.17, 1.79.]).The overall incidence of both cancers is low but increasing. Variations in incidence may reflect changes in coding practice or increased exposure to associated risk factors.

Dementia is one of the most disabling and burdensome diseases. Incontinence in people with dementia is distressing, adds to carer burden, and influences decisions to relocate people to care homes. Successful and safe management of incontinence in people with dementia presents additional challenges. The aim of this study was to investigate the rates of first diagnosis in primary care of urinary and faecal incontinence among people aged 60-89 with dementia, and the use of medication or indwelling catheters for urinary incontinence.We extracted data on 54,816 people aged 60-89 with dementia and an age-gender stratified sample of 205,795 people without dementia from 2001 to 2010 from The Health Improvement Network (THIN), a United Kingdom primary care database. THIN includes data on patients and primary care consultations but does not identify care home residents. Rate ratios were adjusted for age, sex, and co-morbidity using multilevel Poisson regression. The rates of first diagnosis per 1,000 person-years at risk (95% confidence interval) for urinary incontinence in the dementia cohort, among men and women, respectively, were 42.3 (40.9-43.8) and 33.5 (32.6-34.5). In the non-dementia cohort, the rates were 19.8 (19.4-20.3) and 18.6 (18.2-18.9). The rates of first diagnosis for faecal incontinence in the dementia cohort were 11.1 (10.4-11.9) and 10.1 (9.6-10.6). In the non-dementia cohort, the rates were 3.1 (2.9-3.3) and 3.6 (3.5-3.8). The adjusted rate ratio for first diagnosis of urinary incontinence was 3.2 (2.7-3.7) in men and 2.7 (2.3-3.2) in women, and for faecal incontinence was 6.0 (5.1-7.0) in men and 4.5 (3.8-5.2) in women. The adjusted rate ratio for pharmacological treatment of urinary incontinence was 2.2 (1.4-3.7) for both genders, and for indwelling urinary catheters was 1.6 (1.3-1.9) in men and 2.3 (1.9-2.8) in women.Compared with those without a dementia diagnosis, those with a dementia diagnosis have approximately three times the rate of diagnosis of urinary incontinence, and more than four times the rate of faecal incontinence, in UK primary care. The clinical management of urinary incontinence in people with dementia with medication and particularly the increased use of catheters is concerning and requires further investigation. Please see later in the article for the Editors' Summary.

Research using electronic health records (EHRs) relies heavily on coded clinical data. Due to variation in coding practices, it can be difficult to aggregate the codes for a condition in order to define cases. This paper describes a methodology to develop 'indicator markers' found in patients with early rheumatoid arthritis (RA); these are a broader range of codes which may allow a probabilistic case definition to use in cases where no diagnostic code is yet recorded.We examined EHRs of 5,843 patients in the General Practice Research Database, aged ≥ 30 y, with a first coded diagnosis of RA between 2005 and 2008. Lists of indicator markers for RA were developed initially by panels of clinicians drawing up code-lists and then modified based on scrutiny of available data. The prevalence of indicator markers, and their temporal relationship to RA codes, was examined in patients from 3 y before to 14 d after recorded RA diagnosis.Indicator markers were common throughout EHRs of RA patients, with 83.5% having 2 or more markers. 34% of patients received a disease-specific prescription before RA was coded; 42% had a referral to rheumatology, and 63% had a test for rheumatoid factor. 65% had at least one joint symptom or sign recorded and in 44% this was at least 6-months before recorded RA diagnosis.Indicator markers of RA may be valuable for case definition in cases which do not yet have a diagnostic code. The clinical diagnosis of RA is likely to occur some months before it is coded, shown by markers frequently occurring ≥ 6 months before recorded diagnosis. It is difficult to differentiate delay in diagnosis from delay in recording. Information concealed in free text may be required for the accurate identification of patients and to assess the quality of care in general practice.

BackgroundEarly diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.Methods and findingsWe systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.ConclusionsThere is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.

BackgroundAnxiety is common, with significant morbidity, but little is known about presentations and recording of anxiety diagnoses and symptoms in primary care. This study aimed to determine trends in incidence and socio-demographic variation in General Practitioner (GP) recorded diagnoses of anxiety, mixed anxiety/depression, panic and anxiety symptoms.Methodology/principal findingsAnnual incidence rates of anxiety diagnoses and symptoms were calculated from 361 UK general practices contributing to The Health Improvement Network (THIN) database between 1998 and 2008, adjusted for year of diagnosis, gender, age, and deprivation. Incidence of GP recorded anxiety diagnosis fell from 7.9 to 4.9/1000PYAR from 1998 to 2008, while incidence of anxiety symptoms rose from 3.9 to 5.8/1000PYAR. Incidence of mixed anxiety/depression fell from 4.0 to 2.2/1000PYAR, and incidence of panic disorder fell from 0.9/1000PYAR in 1998 to 0.5/1000PYAR in 2008. All these entries were approximately twice as common in women and more common in deprived areas. GP-recorded anxiety diagnoses, symptoms and mixed anxiety/depression were commonest aged 45-64 years, whilst panic disorder/attacks were more common in those 16-44 years. GPs predominately use broad non-specific codes to record anxiety problems in the UK.Conclusions/significanceGP recording of anxiety diagnoses has fallen whilst recording of anxiety symptoms has increased over time. The incidence of GP recorded diagnoses of anxiety diagnoses was lower than in screened populations in primary care. The reasons for this apparent under-recording and whether it represents under-detection in those being seen, a reluctance to report anxiety to their GP, or a reluctance amongst GPs to label people with anxiety requires investigation.