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1.
Cereb Circ Cogn Behav ; 6: 100197, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38226361

RESUMO

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.

2.
NIHR Open Res ; 3: 31, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37881470

RESUMO

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.

3.
BMC Geriatr ; 23(1): 544, 2023 09 07.
Artigo em Inglês | MEDLINE | ID: mdl-37679720

RESUMO

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.


Assuntos
COVID-19 , Pandemias , Humanos , COVID-19/epidemiologia , COVID-19/terapia , Aprendizagem , Pesquisa Qualitativa
4.
Disabil Rehabil ; : 1-10, 2023 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-37545161

RESUMO

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.

5.
PLoS One ; 18(5): e0286308, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37228101

RESUMO

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.


Assuntos
Neoplasias , Autogestão , Masculino , Humanos , Apoio Social , Neoplasias/terapia , Neoplasias/psicologia
6.
Int J Stroke ; 18(6): 720-727, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36621981

RESUMO

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.


Assuntos
Fragilidade , Acidente Vascular Cerebral , Humanos , Idoso , Fragilidade/epidemiologia , Estudos Longitudinais , Idoso Fragilizado/psicologia , Prevalência , Avaliação Geriátrica/métodos , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/epidemiologia , Envelhecimento
7.
Health Open Res ; 5: 17, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38708032

RESUMO

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.

9.
BMJ Open ; 12(1): e055491, 2022 Jan 20.
Artigo em Inglês | MEDLINE | ID: mdl-35058265

RESUMO

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.


Assuntos
Medicina , Autogestão , Reabilitação do Acidente Vascular Cerebral , Serviços de Saúde Comunitária/métodos , Grupos Focais , Humanos , Projetos de Pesquisa , Reabilitação do Acidente Vascular Cerebral/métodos
10.
Front Pharmacol ; 12: 608208, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34867311

RESUMO

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.

11.
BMC Med ; 19(1): 8, 2021 01 12.
Artigo em Inglês | MEDLINE | ID: mdl-33430840

RESUMO

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.


Assuntos
Consumo de Bebidas Alcoólicas/efeitos adversos , Adulto , Idoso , Consumo de Bebidas Alcoólicas/mortalidade , Estudos de Coortes , Ingestão de Alimentos , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Infarto do Miocárdio/epidemiologia , Infarto do Miocárdio/etiologia , Neoplasias/epidemiologia , Neoplasias/etiologia , Modelos de Riscos Proporcionais , Estudos Prospectivos , Fatores de Risco , Acidente Vascular Cerebral/epidemiologia , Acidente Vascular Cerebral/etiologia , Vinho
12.
Ann Fam Med ; 18(2): 148-155, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32152019

RESUMO

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.


Assuntos
Doenças Cardiovasculares/mortalidade , Antagonistas Colinérgicos/efeitos adversos , Cognição/efeitos dos fármacos , Hospitalização/estatística & dados numéricos , Polimedicação , Idoso , Causas de Morte , Demência/epidemiologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Modelos de Riscos Proporcionais , Medição de Risco , Reino Unido/epidemiologia
13.
BMJ Open ; 10(3): e034113, 2020 03 18.
Artigo em Inglês | MEDLINE | ID: mdl-32193265

RESUMO

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.


Assuntos
Atenção à Saúde , Acidente Vascular Cerebral , Adolescente , Adulto , Idoso , Comunicação , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Escócia , Acidente Vascular Cerebral/terapia , Carga de Trabalho , Adulto Jovem
14.
BMJ Open ; 9(9): e029258, 2019 09 18.
Artigo em Inglês | MEDLINE | ID: mdl-31533946

RESUMO

OBJECTIVES: Treatment burden is the workload of healthcare for people with long-term conditions (LTC) and its impact on well-being. A method of measurement is required to identify those experiencing high burden and to measure intervention efficacy. Our aim was to identify, examine and appraise validated patient-reported measures (PRMs) of treatment burden in stroke. Here, stroke serves as an exemplar LTC of older adults. DESIGN: A systematic review of published studies that describe the development and validation of PRMs measuring treatment burden in stroke survivors. DATA SOURCES: We searched MEDLINE, Embase, CINAHL and PsycINFO electronic databases. ELIGIBILITY CRITERIA: Studies published between January 2000 and 12 April 2019 inclusive, in English language. No restrictions were set based on clinical setting or geographical location. DATA EXTRACTION AND SYNTHESIS: Screening, data extraction and quality appraisal were conducted by two independent reviewers. Content of the PRMs was compared with a published taxonomy of treatment burden. Quality appraisal was conducted using International Society for Quality of Life Research standards. RESULTS: From 3993 articles, 6 relevant PRMs were identified: 3 were stroke specific: The Satisfaction with Stroke Care questionnaire; The Stroke Patient-Reported Outcome Measure and The Barriers to Physical Activity after Stroke scale. Three were generic but validated in stroke: The WHO Quality of Life-100; The Patient's Questionnaire on Participation in Discharge Planning and The Chao Perception of Continuity scale. None comprehensively measured treatment burden. Examples of omitted burdens included developing coping strategies, managing finances and returning to driving. The most notable issue regarding quality appraisal was that three PRMs lacked any underpinning qualitative research relevant to the sample. CONCLUSION: There is a need to develop a comprehensive PRM of treatment burden for use in stroke, with potential for use in other older populations.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Acidente Vascular Cerebral/terapia , Humanos , Carga de Trabalho
16.
BMC Med ; 17(1): 74, 2019 04 10.
Artigo em Inglês | MEDLINE | ID: mdl-30967141

RESUMO

BACKGROUND: Multimorbidity is associated with higher mortality, but the relationship with cancer and cardiovascular mortality is unclear. The influence of demographics and type of condition on the relationship of multimorbidity with mortality remains unknown. We examine the relationship between multimorbidity (number/type) and cause of mortality and the impact of demographic factors on this relationship. METHODS: Data source: the UK Biobank; 500,769 participants; 37-73 years; 53.7% female. Exposure variables: number and type of long-term conditions (LTCs) (N = 43) at baseline, modelled separately. Cox regression models were used to study the impact of LTCs on all-cause/vascular/cancer mortality during median 7-year follow-up. All-cause mortality regression models were stratified by age/sex/socioeconomic status. RESULTS: All-cause mortality is 2.9% (14,348 participants). Of all deaths, 8350 (58.2%) were cancer deaths and 2985 (20.8%) vascular deaths. Dose-response relationship is observed between the increasing number of LTCs and all-cause/cancer/vascular mortality. A strong association is observed between cardiometabolic multimorbidity and all three clinical outcomes; non-cardiometabolic multimorbidity (excluding cancer) is associated with all-cause/vascular mortality. All-cause mortality risk for those with ≥ 4 LTCs was nearly 3 times higher than those with no LTCs (HR 2.79, CI 2.61-2.98); for ≥ 4 cardiometabolic conditions, it was > 3 times higher (HR 3.20, CI 2.56-4.00); and for ≥ 4 non-cardiometabolic conditions (excluding cancer), it was 50% more (HR 1.50, CI 1.36-1.67). For those with ≥ 4 LTCs, morbidity combinations that included cardiometabolic conditions, chronic kidney disease, cancer, epilepsy, chronic obstructive pulmonary disease, depression, osteoporosis and connective tissue disorders had the greatest impact on all-cause mortality. In the stratified model by age/sex, absolute all-cause mortality was higher among the 60-73 age group with an increasing number of LTCs; however, the relative effect size of the increasing number of LTCs on higher mortality risk was larger among those 37-49 years, especially men. While socioeconomic status was a significant predictor of all-cause mortality, mortality risk with increasing number of LTCs remained constant across different socioeconomic gradients. CONCLUSIONS: Multimorbidity is associated with higher all-cause/cancer/vascular mortality. Type, as opposed to number, of LTCs may have an important role in understanding the relationship between multimorbidity and mortality. Multimorbidity had a greater relative impact on all-cause mortality in middle-aged as opposed to older populations, particularly males, which deserves exploration.


Assuntos
Bancos de Espécimes Biológicos/estatística & dados numéricos , Demografia , Mortalidade , Multimorbidade , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/mortalidade , Modelos de Riscos Proporcionais , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Doença Pulmonar Obstrutiva Crônica/mortalidade , Insuficiência Renal Crônica/epidemiologia , Insuficiência Renal Crônica/mortalidade , Fatores de Risco , Reino Unido/epidemiologia , Adulto Jovem
17.
J Comorb ; 8(1): 1-8, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29492397

RESUMO

BACKGROUND: Multimorbidity is common in stroke, but the risk factors and effects on mortality remain poorly understood. OBJECTIVE: To examine multimorbidity and its associations with sociodemographic/lifestyle risk factors and all-cause mortality in UK Biobank participants with stroke or transient ischaemic attack (TIA). DESIGN: Data were obtained from an anonymized community cohort aged 40-72 years. Overall, 42 comorbidities were self-reported by those with stroke or TIA. Relative risk ratios demonstrated associations between participant characteristics and number of comorbidities. Hazard ratios demonstrated associations between the number and type of comorbidities and all-cause mortality. Results were adjusted for age, sex, socioeconomic status, smoking, and alcohol intake. Data were linked to national mortality data. Median follow-up was 7 years. RESULTS: Of 8,751 participants (mean age 60.9±6.7 years) with stroke or TIA, the all-cause mortality rate over 7 years was 8.4%. Over 85% reported ≥1 comorbidities. Age, socioeconomic deprivation, smoking and less frequent alcohol intake were associated with higher levels of multimorbidity. Increasing multimorbidity was associated with higher all-cause mortality. Mortality risk was double for those with ≥5 comorbidities compared to those with none. Having cancer, coronary heart disease, diabetes, or chronic obstructive pulmonary disease significantly increased mortality risk. Presence of any cardiometabolic comorbidity significantly increased mortality risk, as did any non-cardiometabolic comorbidity. CONCLUSIONS: In stroke survivors, the number of comorbidities may be a more helpful predictor of mortality than type of condition. Stroke guidelines should take greater account of comorbidities, and interventions are needed that improve outcomes for people with multimorbidity and stroke.

18.
BMJ Open ; 8(1): e018404, 2018 01 14.
Artigo em Inglês | MEDLINE | ID: mdl-29332840

RESUMO

OBJECTIVE: This study aims: (1) to describe the pattern and extent of multimorbidity and polypharmacy in UK Biobank participants with chronic obstructive pulmonary disease (COPD) and (2) to identify which comorbidities are associated with increased risk of adverse drug reactions (ADRs) resulting from polypharmacy. DESIGN: Cross-sectional. SETTING: Community cohort. PARTICIPANTS: UK Biobank participants comparing self-reported COPD (n=8317) with no COPD (n=494 323). OUTCOMES: Multimorbidity (≥4 conditions) and polypharmacy (≥5 medications) in participants with COPD versus those without. Risk of ADRs (taking ≥3 medications associated with falls, constipation, urinary retention, central nervous system (CNS) depression, bleeding or renal injury) in relation to the presence of COPD and individual comorbidities. RESULTS: Multimorbidity was more common in participants with COPD than those without (17% vs 4%). Polypharmacy was highly prevalent (52% with COPD taking ≥5 medications vs 18% in those without COPD). Adjusting for age, sex and socioeconomic status, those with COPD were significantly more likely than those without to be prescribed ≥3 medications contributing to falls (OR 2.27, 95% CI 2.13 to 2.42), constipation (OR 3.42, 95% CI 3.10 to 3.77), urinary retention (OR 3.38, 95% CI 2.94 to 3.87), CNS depression (OR 3.75, 95% CI 3.31 to 4.25), bleeding (OR 4.61, 95% CI 3.35 to 6.19) and renal injury (OR 2.22, 95% CI 1.86 to 2.62). Concomitant cardiovascular disease was associated with the greatest risk of taking ≥3 medications associated with falls/renal injury. Concomitant mental health conditions were most strongly associated with medications linked with CNS depression/urinary retention/bleeding. CONCLUSIONS: Multimorbidity is common in COPD and associated with high levels of polypharmacy. Co-prescription of drugs with various ADRs is common. Future research should examine the effects on healthcare outcomes of co-prescribing multiple drugs with similar potential ADRs. Clinical guidelines should emphasise assessment of multimorbidity and ADR risk.


Assuntos
Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/epidemiologia , Multimorbidade , Polimedicação , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico , Idoso , Estudos de Coortes , Estudos Transversais , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Autorrelato , Reino Unido/epidemiologia
19.
BMC Fam Pract ; 19(1): 9, 2018 01 09.
Artigo em Inglês | MEDLINE | ID: mdl-29316892

RESUMO

BACKGROUND: Treatment burden is the workload of healthcare experienced by those with long-term conditions and the impact that this has on well-being. Treatment burden can negatively impact on quality of life and adherence to treatments. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. This has been under investigated in stroke. The aim of this paper is to create a conceptual model of treatment burden and patient capacity for people who have had a stroke through exploration of their experiences of healthcare. METHODS: Interviews were conducted at home with 29 individuals who have had a stroke. These were recorded and transcribed verbatim. Fifteen explored treatment burden and were analysed by framework analysis underpinned by Normalisation Process Theory (NPT). Fourteen explored patient capacity and were analysed by thematic analysis. Taxonomies of treatment burden and patient capacity were created and a conceptual model produced. RESULTS: Mean age was 68 years. Sixteen were men and 13 women. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment. CONCLUSIONS: Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services has considerable influence on treatment burden and patient capacity. Findings have important implications for the design of clinical guidelines and healthcare delivery, highlighting issues such as the importance of good care co-ordination.


Assuntos
Efeitos Psicossociais da Doença , Assistência de Longa Duração , Administração dos Cuidados ao Paciente , Atenção Primária à Saúde , Reabilitação do Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral , Idoso , Atitude do Pessoal de Saúde , Feminino , Disparidades nos Níveis de Saúde , Humanos , Assistência de Longa Duração/organização & administração , Assistência de Longa Duração/psicologia , Assistência de Longa Duração/normas , Masculino , Administração dos Cuidados ao Paciente/organização & administração , Administração dos Cuidados ao Paciente/normas , Atenção Primária à Saúde/métodos , Atenção Primária à Saúde/organização & administração , Atenção Primária à Saúde/normas , Competência Profissional , Sistemas de Apoio Psicossocial , Pesquisa Qualitativa , Fatores Socioeconômicos , Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral/terapia , Reino Unido , Carga de Trabalho
20.
Europace ; 20(FI_3): f329-f336, 2018 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-29112751

RESUMO

Aims: To examine the number and type of co-morbid long-term health conditions (LTCs) and their associations with all-cause mortality in an atrial fibrillation (AF) population. Methods and results: Community cohort participants (UK Biobank n = 502 637) aged 37-73 years were recruited between 2006 and 2010. Self-reported LTCs (n = 42) identified in people with AF at baseline. All-cause mortality was available for a median follow-up of 7 years (interquartile range 76-93 months). Hazard ratios (HRs) examined associations between number and type of co-morbid LTC and all-cause mortality, adjusting for age, sex, socio-economic status, smoking, and anticoagulation status. Three thousand six hundred fifty-one participants (0.7% of the study population) reported AF; mean age was 61.9 years. The all-cause mortality rate was 6.7% (248 participants) at 7 years. Atrial fibrillation participants with ≥4 co-morbidities had a six-fold higher risk of mortality compared to participants without any LTC. Co-morbid heart failure was associated with higher risk of mortality [HR 2.96, 95% confidence interval (CI) 1.83-4.80], whereas the presence of co-morbid stroke did not have a significant association. Among non-cardiometabolic conditions, presence of chronic obstructive pulmonary disease (HR 3.31, 95% CI 2.14-5.11) and osteoporosis (HR 3.13, 95% CI 1.63-6.01) was associated with a higher risk of mortality. Conclusion: Survival in middle-aged to older individuals with self-reported AF is strongly correlated with level of multimorbidity. This group should be targeted for interventions to optimize their management, which in turn may potentially reduce the impact of their co-morbidities on survival. Future AF clinical guidelines need to place greater emphasis on the issue of co-morbidity.


Assuntos
Fibrilação Atrial/epidemiologia , Adulto , Idoso , Fibrilação Atrial/diagnóstico , Fibrilação Atrial/mortalidade , Fibrilação Atrial/terapia , Causas de Morte , Comorbidade , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Multimorbidade , Prevalência , Estudos Prospectivos , Medição de Risco , Fatores de Risco , Autorrelato , Fatores de Tempo , Reino Unido/epidemiologia
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