Stroke recovery-what are people talking about on Twitter? A content analysis.

PURPOSE: Prioritisation exercises seek out what matters to key stakeholders to inform the planning of research. Social media platforms are potentially useful data sources. The aim was to examine the content of tweets, short messages containing text and pictures, to ascertain the priorities of Twitter users regarding stroke recovery. MATERIALS AND METHODS: Content analysis of Twitter was conducted. An electronic search used the identifiers: #strokesurvivor and #strokerecovery. Tweets spanning four weeks from January 2021 were analysed. RESULTS: There were 1361 tweets extracted and 486 analysed following exclusion of duplicates and unrelated material. Six themes were uncovered (n = number of tweets): maintaining motivation and positivity (153); sharing of resources (146); raising awareness of stroke (74); symptomatic aspects of recovery (39); experience of rehabilitation (63); and concerns about Covid-19 (17). CONCLUSIONS: Despite the brevity of tweets, a rich picture arose. A key limitation was lack of biographical data about Twitter users. Recommendations about topics requiring attention from stroke researchers, clinicians and policy makers are: management of psychological problems; public perception of stroke; rehabilitation considerations including treatment burden, person-centred care and equality of care; symptom management including fatigue and aphasia. Findings can be used to supplement and validate other priority-setting exercises.

Priority setting exercises are integral to improving patient care.Twitter is a useful source of data alongside more traditional in-person methods.Key areas of stroke care requiring attention include: psychological support; information sharing; treatment burden; equity of access to rehabilitation services; management of fatigue and aphasia.

Not daily, sometimes not ever - mixed methods exploration of the contemporary relevance of tasks contained in extended activities of daily living scales.

BACKGROUND: Assessment of functional status is an integral part of older adult healthcare and research. Therefore, it is essential that tools to capture function are contextually appropriate. Many tools designed to evaluate extended Activities of Daily Living (eADLs) were developed decades ago. OBJECTIVE: Our aim was to explore which eADL tasks are commonly performed by older adults and map these tasks to popular eADL scales, seeking stakeholder perspectives to inform recommendations on scale content. DESIGN: Online survey with quantitative questions and free text followed-by semi-structured interviews. SUBJECTS: Older adults (≥60-years), carers and health, social care and voluntary/community professionals. METHODS: We extracted eADL tasks from existing scales to develop a survey on frequency of performance, with space for additional comment. The survey was disseminated via Join Dementia Research and other clinical and professional networks. Online semi-structured interviews were undertaken with thematic analysis of verbatim transcripts. RESULTS: From 2244 online survey responses, 87% came from older people and two-thirds of respondents were female. Some eADL tasks were never performed by many participants. Tasks not part of existing tools included online banking and mobile phone use. From fifteen interviews, a recurring theme was that technological and societal changes have altered daily tasks. CONCLUSIONS: Commonly used eADL scales contain obsolete tasks and omit tasks older people consider part of their everyday lives. There is a need to work collaboratively to update eADL tools to reflect the priorities and activities of older people to ensure these remain valid measures for use in practice and research. To complement this abstract, a video abstract is available online. A more detailed video-based summary of the content is also available as supplemental material.

The Acceptability of post-stroke cognitive testing through the lens of the theory of acceptability, a qualitative study.

Background: Cognitive impairment is common after stroke and screening is recommended. However, there is a lack of evidence on the best way to assess cognition after stroke and a tendency to focus on the clinician rather than stroke survivor. The Theoretical Framework of Acceptability (TFA) was developed to better understand the factors that contribute to the acceptability of healthcare interventions from the patient perspective. We aimed to explore the acceptability of post-stroke cognitive assessment from the stroke survivor perspective, using the TFA as a lens. Methods: We analysed interviews conducted with people admitted to hospital after stroke. Inclusion criteria: ≥18 years, able to provide informed consent. Semi-structured interviews were conducted 1-3 weeks after discharge from hospital in the participant's home to explore the experience of cognitive assessment in hospital. Interviews were audio recorded and transcribed verbatim. Data were analysed using framework analysis, with a framework underpinned by the TFA. Results: Of the 13 participants interviewed, 8 were male, 6 lived in the most deprived SIMD quintile. Ages were 62-84 years. Five themes were identified that describe the factors that influence acceptability of cognitive screening from the patient perspective: (1) participation motives; (2) trust in health professionals; (3) perceived risks of harm; (4) information provision; (5) burden of testing. Conclusion: Clinical teams should be confident that stroke survivors expect cognitive testing and understand its rational. However, the provision of information and results of cognitive testing should be person-centred.

EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis.

Background: The workload health and social care service users and caregivers take on, and their capacity to do this work is important. It may play a key part in shaping the implementation of innovations in health service delivery and organisation; the utilisation and satisfaction with services; and the outcomes of care. Previous research has often focused on experiences of a narrow range of long-term conditions, and on factors that shape adherence to self-care regimes. Aims: With the aim of deriving policy and practice implications for service redesign, this evidence synthesis will extend our understanding of service user and caregiver workload and capacity by comparing how they are revealed in qualitative studies of lived experience of three kinds of illness trajectories: long-term conditions associated with significant disability (Parkinson's disease, schizophrenia); serious relapsing remitting disease (Inflammatory Bowel Disease, bipolar disorder); and rapidly progressing acute disease (brain cancer, early onset dementia). Methods: We will review and synthesise qualitative studies of lived experience of participation in health and social care that are shaped by interactions between experienced treatment burdens, social inequalities and illness trajectories. The review will involve:   1.  Construction of a theory-informed coding manual; systematic search of bibliographic databases to identify, screen and quality assess full-text papers.   2.  Analysis of papers using manual coding techniques, and text mining software; construction of taxonomies of service user and caregiver work and capacity.   3.  Designing a model of core components and identifying common factors across conditions, trajectories, and contexts.   4.  Work with practitioners, and a Patient and Public Involvement (PPI) group, to explore the validity of the models produced; to develop workload reduction strategies; and to consider person-centred service design. Dissemination: We will promote workload reduction models to support service users and caregivers and produce policy briefs and peer-reviewed publications for practitioners, policy-makers, and researchers.

Our experiences of illness are often complex. We may have to work hard too. We may need to monitor and record symptoms: take up different diets and physical activity; use different drugs and medical devices; develop expertise in using websites and information technology; coordinate input from health and care services; sometimes we have to work out how to pay for the services we need. How we get through this work is affected by our capacity to do it, and that is shaped by personal and wider resources, we can draw on. All of this is also affected by the services that are available to us, and by the ways our chances in life are shaped by income, ethnicity, education, gender, and age. The kinds of illnesses we have and how they progress, mean that these factors change over time. We call these changes trajectories. To better understand service user work and capacity, we will review published studies that tell us about people's everyday experiences of living with illnesses. We focus on three rarely studied trajectories. These are long-term conditions associated with significant disability; serious relapsing remitting disease; and rapidly progressing acute disease. We will first use existing research to build a framework in which we can describe and understand relevant aspects of the published studies. We will use this framework to extract relevant information from the studies. This will enable us to make a model of common features of service user work and capacity across different conditions, their trajectories, service organisation and delivery, and patterns of social and economic disadvantage. Finally, we will work with groups of service users and caregivers, and with health and social care professionals to apply the model to the development of strategies to reduce workload and improve service design for people with complex health problems.

Listening and learning: a qualitative study of Scottish care home staff experiences of managing COVID-19 between March 2020-August 2022.

BACKGROUND: The serious outcomes of outbreaks of COVID-19 in care homes have been described internationally. The experiences of professionals working through outbreaks has received less attention, missing opportunities to acknowledge and learn lessons. Our aim was to explore the experiences of care home staff in Scotland of managing COVID-19 within their homes to help inform understanding and future practice. METHODS: From April to August 2022, 34 individual semi-structured interviews were conducted with care home staff working in homes which experienced an outbreak(s) of COVID-19. Reflexive thematic methods were used to analyse verbatim deidentified transcripts. FINDINGS: There was no singular experience of COVID-19 outbreaks within care homes. We identified four broad groupings of homes with outbreaks (significant outbreaks, managed outbreaks, outbreaks in remote/rural homes & outbreaks in homes supporting younger adults), with overlaps in timing and severity and variation in the support received and impact. The national response to the COVID-19 pandemic resulted in fundamental change to care home relationships. Staff responded by adaptation in uncertainty. However, they were challenged by emerging inequalities influencing residents' care. There were tensions between staff experience and evolving external approaches to regulation and oversight. All this change resulted in psychological impacts on staff. However, there was also widespread evidence of compassionate leadership and teamwork in their responses. Effective sources of support were underpinned by respectful relationships and continuity, tailored to individual contexts. CONCLUSIONS: The lived experiences of care home staff during the COVID-19 pandemic provide valuable insights applicable beyond the pandemic context. This includes: recognition of the specialism, complexity and diversity of care home practice; the value afforded by embedding genuine representation and involvement in planning, policy-making and research; the need for individualising to people in their contexts and the value of fostering respectful relationships across professional groups to support residents.

Adaptation and content validation of a patient-reported measure of treatment burden for use in stroke survivors: the patient experience with treatment and self-management in stroke (PETS-stroke) measure.

PURPOSE: Stroke survivors often live with significant treatment burden yet our ability to examine this is limited by a lack of validated measurement instruments. We aimed to adapt the 60-item, 12-domain Patient Experience with Treatment and Self-Management (PETS) (version 2.0, English) patient-reported measure to create a stroke-specific measure (PETS-stroke) and to conduct content validity testing with stroke survivors. MATERIALS AND METHODS: Step 1 - Adaptation of PETS to create PETS-stroke: a conceptual model of treatment burden in stroke was utilised to amend, remove or add items. Step 2 - Content validation: Fifteen stroke survivors in Scotland were recruited through stroke groups and primary care. Three rounds of five cognitive interviews were audio recorded and transcribed. Framework analysis was used to explore importance/relevance/clarity of PETS-stroke content. COSMIN reporting guidelines were followed. RESULTS: The adapted PETS-stroke had 34 items, spanning 13 domains; 10 items unchanged from PETS, 6 new and 18 amended. Interviews (n = 15) resulted in further changes to 19 items, including: instructions; wording; item location; answer options; and recall period. CONCLUSIONS: PETS-stroke has content that is relevant, meaningful and comprehensible to stroke survivors. Content validity and reliability testing are now required. The validated tool will aid testing of tailored interventions to lessen treatment burden.IMPLICATIONS FOR REHABILITATIONTreatment burden is reported by stroke survivors but no stroke-specific measure of treatment burden exists.We adapted an existing measure of treatment burden for use in multimorbid patients (PETS) to create a stroke specific version (PETS-stroke).The items in PETS-stroke are relevant and meaningful to people with stroke.Further testing will examine construct validity, reliability, and useability.This measure will be useful in future RCTs to measure treatment burden and to identify stroke patients who are at high risk of treatment burden.

Treatment burden in individuals living with and beyond cancer: A systematic review of qualitative literature.

BACKGROUND: Individuals with cancer are being given increasing responsibility for the self-management of their health and illness. In other chronic diseases, individuals who experience treatment burden are at risk of poorer health outcomes. Less is known about treatment burden and its impact on individuals with cancer. This systematic review investigated perceptions of treatment burden in individuals living with and beyond cancer. METHODS AND FINDINGS: Medline, CINAHL and EMBASE databases were searched for qualitative studies that explored treatment burden in individuals with a diagnosis of breast, prostate, colorectal, or lung cancer at any stage of their diagnostic/treatment trajectory. Descriptive and thematic analyses were conducted. Study quality was assessed using a modified CASP checklist. The review protocol was registered on PROSPERO (CRD42021145601). Forty-eight studies were included. Health management after cancer involved cognitive, practical, and relational work for patients. Individuals were motivated to perform health management work to improve life-expectancy, manage symptoms, and regain a sense of normality. Performing health care work could be empowering and gave individuals a sense of control. Treatment burden occurred when there was a mismatch between the resources needed for health management and their availability. Individuals with chronic and severe symptoms, financial challenges, language barriers, and limited social support are particularly at risk of treatment burden. For those with advanced cancer, consumption of time and energy by health care work is a significant burden. CONCLUSION: Treatment burden could be an important mediator of inequities in cancer outcomes. Many of the factors leading to treatment burden in individuals with cancer are potentially modifiable. Clinicians should consider carefully what they are asking or expecting patients to do, and the resources required, including how much patient time will be consumed.

Adaptation and Content Validation of a Patient-Reported Measure of Treatment Burden for use in Stroke Survivors (PETS-Stroke).

Context: Treatment burden is defined as the workload of healthcare for people with long-term conditions and the impact on wellbeing. Stroke survivors often live with considerable treatment burden because of high healthcare workload alongside deficiencies in care provision that can make navigating healthcare systems and managing health more difficult. Ways of measuring treatment burden after stroke are currently lacking. The Patient Experience with Treatment and Self-Management measure (PETS) is a 60-item patient-reported measure that was developed to measure treatment burden in a multi-morbid population. Although comprehensive, this is not a stroke-specific measure and therefore omits some burdens associated with stroke rehabilitation. Objective: Our aim was to adapt (PETS) (version 2.0, English), a patient-reported measure of treatment burden in multimorbidity, to create a stroke-specific measure (PETS-stroke), and to conduct content validity testing in a UK stroke survivor population. Study Design and analysis: PETS items were adapted to create PETS-stroke, using a previously developed conceptual model of treatment burden in stroke. Content validation involved three rounds of qualitative cognitive interviews with stroke survivors in Scotland recruited through stroke groups and primary care. Participants were asked for feedback on the importance, relevance and clarity of content of PETS-stroke. Framework analysis was used to explore responses. Setting: Community. Population studied: Stroke survivors. Instrument: Patient Experience with Treatment and Self-Management in stroke (PETS-stroke) scale. Results: Interviews (n=15) resulted in changes to the wording of instructions and items; location of items within the measure; answer options; and recall period. The final PETS-stroke tool has 34-items, spanning 13 domains. It includes 10 items unchanged from PETS, 6 new and 18 amended. Conclusions: The development of a systematic method of quantifying treatment burden from the perspective of stroke survivors will allow for the identification of patients at high risk of treatment burden and will aid the design and testing of tailored interventions aimed at lessening treatment burden.

Prevalence, measurement, and implications of frailty in stroke survivors: An analysis of three global aging cohorts.

BACKGROUND: Our understanding of the relationship between frailty and stroke, beyond the acute phase of stroke, is limited. We aimed to estimate the prevalence of frailty in stroke survivors using differing methods of assessment and describe relationships with stroke outcomes. METHODS: We used data from three international population surveys (American Health and Retirement Survey/English Longitudinal Study of Ageing/Survey for Health and Retirement in Europe) of aging. Frailty status was assessed using the Fried frailty phenotype, a 40-item frailty index (FI) and the clinical frailty scale (CFS). We created estimates of frailty prevalence and assessed association of frailty with outcomes of mortality/hospital admission/recurrent stroke at 2 years follow-up using logistic regression models adjusted for age/sex. Additional analyses explored effects of adding cognitive measures to frailty assessments and of missing grip strength data. FINDINGS: Across 9617 stroke survivors, using the frailty phenotype, 23.8% (n = 2094) identified as frail; with CFS, 30.1% (n = 2906) were moderately or severely frail; using FI, 22.7% (n = 2147) had moderate frailty and 31.9% (n = 3021) had severe frailty. Frailty was associated with increased risk of mortality/hospitalization/recurrent stroke using all three measures. Adding cognitive variables to the FI produced minimal difference in prevalence of frailty. People with physical frailty (phenotype or CFS) plus cognitive impairment had a greater risk of mortality than people with an equivalent level of frailty but no cognitive impairment. Excluding people unable to provide grip strength underestimated frailty prevalence. INTERPRETATION: Frailty is common in stroke and associated with poor outcomes, regardless of measure used. Adding cognitive variables to frailty phenotype/CFS measures identified those at greater risk of poor outcomes. Physical and cognitive impairments in stroke survivors do not preclude frailty assessment.

Protocol for the development and validation of a patient reported measure (PRM) of treatment burden in stroke.

Background: Treatment burden is the workload of healthcare for people with long-term conditions and the impact on wellbeing. A validated measure of treatment burden after stroke is needed. We aim to adapt a patient-reported measure (PRM) of treatment burden in multimorbidity, PETS (Patient Experience with Treatment and Self-Management version 2.0), to create a stroke-specific measure, PETS-stroke. We aim to examine content validity, construct validity, reliability and feasibility in a stroke survivor population. Methods: 1) Adaptation of 60-item PETS to PETS-stroke using a taxonomy of treatment burden. 2) Content validity testing through cognitive interviews that will explore the importance, relevance and clarity of each item. 3) Evaluation of scale psychometric properties through analysis of data from stroke survivors recruited via postal survey (n=340). Factor structure will be tested with confirmatory factor analysis and Cronbach's alpha will be used to index internal consistency. Construct validity will be tested against: The Stroke Southampton Self-Management Questionnaire; The Satisfaction with Stroke Care Measure; and The Shortened Stroke Impact Scale. We will explore known-groups validity by exploring the association between treatment burden, socioeconomic deprivation and multimorbidity. Test-retest reliability will be examined via re-administration after 2 weeks. Acceptability and feasibility of use will be explored via missing data rates and telephone interviews with 30 participants. Conclusions: We aim to create a validated PRM of treatment burden after stroke. PETS-stroke is designed for use as an outcome measure in clinical trials of stroke treatments and complex interventions to ascertain if treatments are workable for patients in the context of their everyday lives.

Supported self-management in community stroke rehabilitation: what is it and how does it work? A protocol for a realist evaluation study.

INTRODUCTION: A growing evidence base demonstrates the effectiveness of supported self-management in stroke for stroke survivors and their families. However, there is significant variation in its implementation in community stroke care and little understanding about how supported self-management works and is delivered across different settings, models used and contexts of community stroke rehabilitation. METHODS AND ANALYSIS: Using a mixed method, realist approach across two phases, this protocol describes a study on community-based supported self-management. The aim is to identify the mechanisms and outcomes of supported self-management in stroke and to understand how supported self-management is implemented in different contexts of community stroke rehabilitation. Phase 1 involves (1) a realist synthesis, (2) a scoping and mapping of current community rehabilitation settings and (3) a Q-methodology study to develop initial programme theories about how community-based supported self-management works, for whom and in what contexts. Phase 2 involves realist informed interviews/focus groups with stroke survivors, community rehabilitation practitioners and team managers from across Scotland to test and refine programme theories and an explanatory model for how supported self-management works across different contexts of community-based stroke rehabilitation. ETHICS AND DISSEMINATION: Ethical approval and R&D approvals have been granted from East of Scotland Research Ethics Committee (REC reference number: 19/ES/0055) and participating NHS boards. An understanding of how, for whom and in what contexts community-based supported self-management works will help to strengthen its delivery in practice. Such an understanding will enable the design of context-specific recommendations for policy and practice that genuinely reflect the challenges in implementing supported self-management in community stroke care. Results will be disseminated to clinical partners working in community stroke rehabilitation, stroke survivors and families and to policymakers and third sector partners involved in the provision of long-term support for people affected by stroke. PROSPERO REGISTRATION NUMBER: CRD42020166208.

Stroke recovery - what are people talking about on Twitter?

Context: To aid prioritisation of funding for stroke research, a Stroke Priority Setting Partnership is being conducted in the UK by The Stroke Association using surveys and workshops with stroke survivors, stroke carers and health professionals. Another valuable source of information about topics that require research is the social media platform Twitter. Objective: To ascertain common topics of discussion in relation to stroke recovery on Twitter amongst stroke survivors, their carers, and the general public. Study design and analysis: Content analysis of public posts on Twitter. Dataset: An electronic search of Twitter was performed to analyse the content of two major stroke discussion tags: #strokesurvivor and #strokerecovery. Tweets were collected using NCapture, an open-source extension for the internet browser Chrome. Tweets spanning 5 weeks over the course of January to February 2021 were analysed. Population studied: Tweets made by stroke survivors and their carers or other interested members of the public were included and those made by health professionals or organisations (e.g. charities or health care providers) were excluded. All tweets were fully anonymised and edited where necessary to omit any identifying information. Outcome measures: The content of each tweet was analysed thematically using NVIVO, with tweets being coded by their content and sentiment to identify trends in discussion. Results: 486 tweets were analysed following the removal of duplicate and unrelated material. From these, 6 themes were identified: motivation & positivity; raising of stroke awareness; experience of the stroke rehabilitation process; symptomatic aspects of stroke recovery; sharing of stroke-related resources; and concerns about COVID-19. Conclusions: Twitter's role as a space for peer-support and motivation amongst survivors was evident, as was its potential for promoting awareness of stroke and its sequalae to the public. Amongst the most prominent aspects of recovery discussed was the psychological impact of stroke, with users expressing difficulty in addressing the emotional sequalae in comparison to the physical aspects. This may be addressed by targeted funding of mental health services, and recognition of the specialised needs of stroke survivors. It is hoped that the findings of this project will be useful in guiding the apportioning of funding, as well as complementing the findings of the James Lind Alliance's Priority Setting Partnership.

Understanding Stakeholder Views Regarding the Design of an Intervention Trial to Reduce Anticholinergic Burden: A Qualitative Study.

Background: Anticholinergic burden (ACB), is defined as the cumulative effect of anticholinergic medication which are widely prescribed to older adults despite increasing ACB being associated with adverse effects such as: falls, dementia and increased mortality. This research explores the views of health care professionals (HCPs) and patients on a planned trial to reduce ACB by stopping or switching anticholinergic medications. The objectives were to explore the views of key stakeholders (patients, the public, and HCPs) regarding the potential acceptability, design and conduct of an ACB reduction trial. Materials and Methods: We conducted qualitative interviews and focus groups with 25 HCPs involved in prescribing medication with anticholinergic properties and with 22 members of the public and patients who were prescribed with the medication. Topic guides for the interviews and focus groups explored aspects of feasibility including: 1) views of a trial of de-prescribing/medication switching; 2) how to best communicate information about such a trial; 3) views on who would be best placed and preferred to undertake such medication changes, e.g., pharmacists or General Practitioners (GPs)? 4) perceived barriers and facilitators to trial participation and the smooth conduct of such a trial; 5) HCP views on the future implementability of this approach to reducing ACB and 6) patients' willingness to be contacted for participation in a future trial. Qualitative data analysis was underpinned by Normalization Process Theory. Results: The public, patients and HCPs were supportive of an ACB reduction trial. There was consensus among the different groups that key points to consider with such a trial included: 1) ensuring patient engagement throughout to enable concerns/potential pitfalls to be addressed from the beginning; 2) ensuring clear communication to minimise potential misconceptions about the reasons for ACB reduction; and 3) provision of access to a point of contact for patients throughout the life of a trial to address concerns; The HCPs in particular suggested two more key points: 4) minimise the workload implications of any trial; and 5) pharmacists may be best placed to carry out ACB reviews, though overall responsibility for patient medication should remain with GPs. Conclusion: Patients, the public and HCPs are supportive of trials to reduce ACB. Good communication and patient engagement during design and delivery of a trial are essential as well as safety netting and minimising workload.

Core Outcome Measures for Palliative and End-of-Life Research After Severe Stroke: Mixed-Method Delphi Study.

Background and Purpose: Stroke is the second commonest cause of death worldwide and a leading cause of severe disability, yet there are no published trials of palliative care in stroke. To design and evaluate palliative care interventions for people with stroke, researchers need to know what measurable outcomes matter most to patients and families, stroke professionals, and other service providers. Methods: A multidisciplinary steering group of professionals and laypeople managed the study. We synthesized recommendations from respected United Kingdom and international consensus documents to generate a list of outcome domains and then performed a rapid scoping literature review to identify potential outcome measures for use in future trials of palliative care after stroke. We then completed a 3-round, online Delphi survey of professionals, and service users to build consensus about outcome domains and outcome measures. Finally, we held a stakeholder workshop to review and finalize this consensus. Results: We generated a list of 36 different outcome domains from 4 key policy documents. The rapid scoping review identified 43 potential outcome measures that were used to create a shortlist of 16 measures. The 36 outcome domains and 16 measures were presented to a Delphi panel of diverse healthcare professionals and lay service users. Of 48 panelists invited to take part, 28 completed all 3 rounds. Shared decision-making and quality of life were selected as the most important outcome domains for future trials of palliative care in stroke. Additional comments highlighted the need for outcomes to be feasible, measurable, and relevant beyond the initial, acute phase of stroke. The stakeholder workshop endorsed these results. Conclusions: Future trials of palliative care after stroke should include pragmatic outcome measures, applicable to the evolving patient and family experiences after stroke and be inclusive of shared decision-making and quality of life.

Barriers and facilitators to reducing anticholinergic burden: a qualitative systematic review.

Background Despite common use, anticholinergic medications have been associated with serious health risks. Interventions to reduce their use are being developed and there is a need to understand their implementation into clinical care. Aim of review This systematic review aims to identify and analyse qualitative research studies exploring the barriers and facilitators to reducing anticholinergic burden. Methods Medline (OVID), EMBASE (OVID), CINAHL (EMBSCO) and PsycINFO (OVID) were searched using comprehensive search terms. Peer reviewed studies published in English presenting qualitative research in relation to the barriers and facilitators of deprescribing anticholinergic medications, involving patients, carers or health professionals were eligible. Normalization Process Theory was used to explore and explain the data. Results Of 1764 identified studies, two were eligible and both involved healthcare professionals (23 general practitioners, 13 specialist clinicians and 12 pharmacists). No studies were identified that involved patients or carers. Barriers to collaborative working often resulted in poor motivation to reduce anticholinergic use. Low confidence, system resources and organisation of care also hindered anticholinergic burden reduction. Good communication and relationships with patients, carers and other healthcare professionals were reported as important for successful anticholinergic burden reduction. Having a named person for prescribing decisions, and clear role boundaries, were also important facilitators. Conclusions This review identified important barriers and facilitators to anticholinergic burden reduction from healthcare provider perspectives which can inform implementation of such deprescribing interventions. Studies exploring patient and carer perspectives are presently absent but are required to ensure person-centeredness and feasibility of future interventions.

Association between patterns of alcohol consumption (beverage type, frequency and consumption with food) and risk of adverse health outcomes: a prospective cohort study.

BACKGROUND: Alcohol consumption is a leading contributor to death and disability worldwide, but previous research has not examined the effects of different patterns of alcohol consumption. The study objective was to understand the relationship between different alcohol consumption patterns and adverse health outcomes risk, adjusting for average amount consumed among regular drinkers. METHODS: This was a prospective cohort study of UK Biobank (UKB) participants. Abstainers, infrequent alcohol consumers or those with previous cancer, myocardial infarction (MI), stroke or liver cirrhosis were excluded. We used beverage type, consumption with food and consumption frequency as exposures and adjusted for potential confounding. All-cause mortality, major cardiovascular events-MACE (MI/stroke/cardiovascular death), accidents/injuries, liver cirrhosis, all-cause and alcohol-related cancer incidence over 9-year median follow-up period were outcomes of interest. RESULTS: The final sample size for analysis was N = 309,123 (61.5% of UKB sample). Spirit drinking was associated with higher adjusted mortality (hazard ratio (HR) 1.25; 95% confidence intervals (CI) 1.14-1.38), MACE (HR 1.31; 95% CI 1.15-1.50), cirrhosis (HR 1.48; 95% CI 1.08-2.03) and accident/injuries (HR 1.10; 95% CI 1.03-1.19) risk compared to red wine drinking, after adjusting for the average weekly alcohol consumption amounts. Beer/cider drinkers were also at a higher risk of mortality (HR 1.18; 95% CI 1.10-1.27), MACE (HR 1.16; 95% CI 1.05-1.27), cirrhosis (HR 1.36; 95% CI 1.06-1.74) and accidents/injuries (HR 1.11; 95% CI 1.06-1.17). Alcohol consumption without food was associated with higher adjusted mortality (HR 1.10; 95% CI 1.02-1.17) risk, compared to consumption with food. Alcohol consumption over 1-2 times/week had higher adjusted mortality (HR 1.09; 95% CI 1.03-1.16) and MACE (HR 1.14; 95% CI 1.06-1.23) risk, compared to 3-4 times/week, adjusting for the amount of alcohol consumed. CONCLUSION: Red wine drinking, consumption with food and spreading alcohol intake over 3-4 days were associated with lower risk of mortality and vascular events among regular alcohol drinkers, after adjusting for the effects of average amount consumed. Selection bias and residual confounding are important possible limitations. These findings, if replicated and validated, have the potential to influence policy and practice advice on less harmful patterns of alcohol consumption.

Self-management interventions for Type 2 Diabetes: systematic review protocol focusing on patient workload and capacity support.

INTRODUCTION: People living with type 2 diabetes undertake a range of tasks to manage their condition, collectively referred to as self-management. Interventions designed to support self-management vary in their content, and efficacy. This systematic review will analyse self-management interventions for type 2 diabetes drawing on theoretical models of patient workload and capacity. METHODS AND ANALYSIS: Five electronic databases (Medline, Embase, CENTRAL, CINAHL and PsycINFO) will be searched from inception to 27th April 2021, supplemented by citation searching and hand-searching of reference lists. Two reviewers will independently review titles, abstracts and full texts. Inclusion criteria include Population: Adults with type 2 diabetes mellitus; Intervention: Randomised controlled trials of self-management support interventions; Comparison: Usual care; Outcomes: HbA1c (primary outcome) health-related quality of life (QOL), medication adherence, self-efficacy, treatment burden, healthcare utilization (e.g. number of appointment, hospital admissions), complications of type 2 diabetes (e.g. nephropathy, retinopathy, neuropathy, macrovascular disease) and mortality; Setting: Community. Study quality will be assessed using the Effective Practice and Organisation of Care (EPOC) risk of bias tool. Interventions will be classified according to the EPOC taxonomy and the PRISMS self-management taxonomy and grouped into similar interventions for analysis. Clinical and methodological heterogeneity will be assessed within subgroups, and random effects meta-analyses performed if appropriate. Otherwise, a narrative synthesis will be performed. Interventions will be graded on their likely impact on patient workload and support for patient capacity. The impact of these theoretical constructs on study outcomes will be explored using meta-regression. Conclusion This review will provide a broad overview of self-management interventions, analysed within the cumulative complexity model theoretical framework. Analyses will explore how the workload associated with self-management, and support for patient capacity, impact on outcomes of self-management interventions. REGISTRATION NUMBER: PROSPERO CRD42021236980.

What helps and hinders the provision of healthcare that minimises treatment burden and maximises patient capacity? A qualitative study of stroke health professional perspectives.

OBJECTIVES: Treatment burden is the healthcare workload experienced by individuals with long-term conditions and the impact on well-being. Excessive treatment burden can negatively affect quality-of-life and adherence to treatments. Patient capacity is the ability of an individual to manage their life and health problems and is dependent on a variety of physical, psychological and social factors. Previous work has suggested that stroke survivors experience considerable treatment burden and limitations on their capacity to manage their health. We aimed to examine the potential barriers and enablers to minimising treatment burden and maximising patient capacity faced by health professionals and managers providing care to those affected by stroke. SETTING: Primary and secondary care stroke services in a single health board area in Scotland. PARTICIPANTS: Face-to-face qualitative interviews with 21 participants including stroke consultants, nurses, physiotherapists, occupational therapists, speech and language therapists, psychologists, general practitioners and health-service managers. OUTCOME MEASURES: Data were analysed using thematic analysis to ascertain any factors that influence the provision of low-burden healthcare. RESULTS: Barriers and facilitators to the provision of healthcare that minimises treatment burden and maximises patient capacity were reported under five themes: healthcare system structure (e.g. care coordination and autonomous working); resources (e.g. availability of ward nurses and community psychologists); knowledge and awareness (e.g. adequate time and materials for optimal information delivery); availability of social care (e.g. waiting times for home adaptations or extra social support) and patient complexity (e.g. multimorbidity). CONCLUSIONS: Our findings have important implications for the design and implementation of stroke care pathways, emphasising the importance of removing barriers to health professional provision of person-centred care. This work can inform the design of interventions aimed at nurturing autonomous working by health professionals, improving communication and care coordination or ensuring availability of a named person throughout the patient journey.

Assessing Risks of Polypharmacy Involving Medications With Anticholinergic Properties.

PURPOSE: Anticholinergic burden (ACB), the cumulative effect of anticholinergic medications, is associated with adverse outcomes in older people but is less studied in middle-aged populations. Numerous scales exist to quantify ACB. The aims of this study were to quantify ACB in a large cohort using the 10 most common anticholinergic scales, to assess the association of each scale with adverse outcomes, and to assess overlap in populations identified by each scale. METHODS: We performed a longitudinal analysis of the UK Biobank community cohort (502,538 participants, baseline age: 37-73 years, median years of follow-up: 6.2). The ACB was calculated at baseline using 10 scales. Baseline data were linked to national mortality register records and hospital episode statistics. The primary outcome was a composite of all-cause mortality and major adverse cardiovascular event (MACE). Secondary outcomes were all-cause mortality, MACE, hospital admission for fall/fracture, and hospital admission with dementia/delirium. Cox proportional hazards models (hazard ratio [HR], 95% CI) quantified associations between ACB scales and outcomes adjusted for age, sex, socioeconomic status, body mass index, smoking status, alcohol use, physical activity, and morbidity count. RESULTS: Anticholinergic medication use varied from 8% to 17.6% depending on the scale used. For the primary outcome, ACB was significantly associated with all-cause mortality/MACE for each scale. The Anticholinergic Drug Scale was most strongly associated with mortality/MACE (HR = 1.12; 95% CI, 1.11-1.14 per 1-point increase in score). The ACB was significantly associated with all secondary outcomes. The Anticholinergic Effect on Cognition scale was most strongly associated with dementia/delirium (HR = 1.45; 95% CI, 1.3-1.61 per 1-point increase). CONCLUSIONS: The ACB was associated with adverse outcomes in a middle- to older-aged population. Populations identified and effect size differed between scales. Scale choice influenced the population identified as potentially requiring reduction in ACB in clinical practice or intervention trials.