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BACKGROUND: Prognostic models that identify individuals with chronic kidney disease (CKD) at greatest risk of developing kidney failure help clinicians to make decisions and deliver precision medicine. It is recognised that people with CKD usually have multiple long-term health conditions (multimorbidity) and often experience frailty. We undertook a systematic review to evaluate the representation and consideration of multimorbidity and frailty within CKD cohorts used to develop and/or validate prognostic models assessing the risk of kidney failure. METHODS: We identified studies that described derivation, validation or update of kidney failure prognostic models in MEDLINE, CINAHL Plus and the Cochrane Library-CENTRAL. The primary outcome was representation of multimorbidity or frailty. The secondary outcome was predictive accuracy of identified models in relation to presence of multimorbidity or frailty. RESULTS: Ninety-seven studies reporting 121 different kidney failure prognostic models were identified. Two studies reported prevalence of multimorbidity and a single study reported prevalence of frailty. The rates of specific comorbidities were reported in a greater proportion of studies: 67.0% reported baseline data on diabetes, 54.6% reported hypertension and 39.2% reported cardiovascular disease. No studies included frailty in model development, and only one study considered multimorbidity as a predictor variable. No studies assessed model performance in populations in relation to multimorbidity. A single study assessed associations between frailty and the risks of kidney failure and death. CONCLUSIONS: There is a paucity of kidney failure risk prediction models that consider the impact of multimorbidity and/or frailty, resulting in a lack of clear evidence-based practice for multimorbid or frail individuals. These knowledge gaps should be explored to help clinicians know whether these models can be used for CKD patients who experience multimorbidity and/or frailty. SYSTEMATIC REVIEW REGISTRATION: This review has been registered on PROSPERO (CRD42022347295).
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Fragilidade , Multimorbidade , Insuficiência Renal , Humanos , Fragilidade/epidemiologia , Prognóstico , Insuficiência Renal/epidemiologia , Insuficiência Renal Crônica/epidemiologiaRESUMO
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.
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Atividades Cotidianas , Estado Funcional , Avaliação Geriátrica , Humanos , Feminino , Idoso , Masculino , Avaliação Geriátrica/métodos , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Inquéritos e Questionários , Entrevistas como Assunto , Envelhecimento/psicologia , Fatores EtáriosRESUMO
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.
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Acidente Vascular Cerebral , Humanos , Inquéritos e Questionários , Acidente Vascular Cerebral/terapia , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/psicologia , Sobreviventes/psicologia , Escócia , Medidas de Resultados Relatados pelo PacienteRESUMO
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.
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COVID-19 , Pandemias , Humanos , COVID-19/epidemiologia , COVID-19/terapia , Aprendizagem , Pesquisa QualitativaRESUMO
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.
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COVID-19 , Mídias Sociais , Acidente Vascular Cerebral , Humanos , Acidente Vascular Cerebral/terapia , EmoçõesRESUMO
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.
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Avaliação de Resultados em Cuidados de Saúde/normas , Cuidados Paliativos , Projetos de Pesquisa/normas , Acidente Vascular Cerebral , Assistência Terminal , Ensaios Clínicos como Assunto , Técnica Delphi , Determinação de Ponto Final/normas , HumanosRESUMO
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.
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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 , VinhoRESUMO
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.
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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/epidemiologiaRESUMO
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.
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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 JovemRESUMO
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.
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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/epidemiologiaRESUMO
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.
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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 TrabalhoRESUMO
BACKGROUND: The prevalence of multimorbidity (the presence of two or more long-term conditions) is rising internationally. Multimorbidity affects patients by increasing their burden of symptoms, but is also likely to increase the self-care demands, or treatment burden, that they experience. Treatment burden refers to the effort expended in operationalising treatments, navigating healthcare systems and managing relations with healthcare providers. This is an important problem for people with chronic illness such as stroke. Polypharmacy is an important marker of both multimorbidity and burden of treatment. In this study, we examined the prevalence of multimorbidity and polypharmacy in a large, nationally representative population of primary care patients with and without stroke, adjusting for age, sex and deprivation. METHODS: A cross-sectional study of 1,424,378 participants aged 18 years and over, from 314 primary care practices in Scotland that were known to be demographically representative of the Scottish adult population. Data included information on the presence of stroke and another 39 long-term conditions, plus prescriptions for regular medications. RESULTS: In total, 35,690 people (2.5%) had a diagnosis of stroke. Of the 39 comorbidities examined, 35 were significantly more common in people with stroke. Of the people with a stroke, the proportion that had one or more additional morbidities present (94.2%) was almost twice that in the control group (48%) (odds ratio (OR) adjusted for age, sex and socioeconomic deprivation 5.18; 95% confidence interval (CI) 4.95 to 5.43). In the stroke group, 12.6% had a record of 11 or more repeat prescriptions compared with only 1.5% of the control group (OR adjusted for age, sex, deprivation and morbidity count 15.84; 95% CI 14.86 to 16.88). Limitations include the use of data collected for clinical rather than research purposes, a lack of consensus in the literature on the definition of certain long-term conditions, and the absence of statistical weighting in the measurement of multimorbidity, although the latter was deemed suitable for descriptive analyses. CONCLUSIONS: Multimorbidity and polypharmacy were strikingly more common in those with a diagnosis of stroke compared with those without. This has important implications for clinical guidelines and the design of health services.
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Polimedicação , Acidente Vascular Cerebral/mortalidade , Adolescente , Adulto , Idoso , Doença Crônica , Comorbidade , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Custos de Cuidados de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Atenção Primária à Saúde/estatística & dados numéricos , Escócia/epidemiologia , Acidente Vascular Cerebral/economiaRESUMO
BACKGROUND: In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding - and sometimes preventing - disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment. DISCUSSION: As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization. SUMMARY: Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts.
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Efeitos Psicossociais da Doença , Modelos Teóricos , Autocuidado , Progressão da Doença , Serviços de Saúde , Humanos , Apoio SocialRESUMO
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.
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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.
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INTRODUCTION: Clinical guidelines recommend the use of the kidney failure risk equation (KFRE) to guide the referral of individuals with chronic kidney disease (CKD) to secondary kidney care services. People living with CKD frequently experience multiple long-term conditions (multimorbidity) and/or frailty. This may impact patients' or carers' perceptions of kidney failure in the context of other health problems and associated risks and emphasises the need for shared decision-making. This paper presents the research protocol for the exploration of patients' and healthcare professionals' perspectives on kidney failure risk and the use of the KFRE in the MULTIPle lOng-term condItions aNd frailTy study. This study aims to investigate patient and healthcare professionals' perspectives and expectations of the use of KFRE in individuals with CKD and multimorbidity and/or frailty, with a focus on shared decision-making. METHODS AND ANALYSIS: Analysis of semistructured interviews with adults who have CKD and multimorbidity and/or frailty and focus groups with healthcare professionals (who are involved in caring for patients with CKD). Framework analysis, underpinned by normalisation process theory, will be used to develop codes and explore themes from the interviews and focus groups. Patient and public involvement has been pivotal to the study conceptualisation and will continue to be embedded throughout the study. ETHICS AND DISSEMINATION: The study protocol has undergone peer review by the NHS Greater Glasgow and Clyde Research and Innovation team and has been granted ethical approval in August 2023 by the NHS Health Research Authority following a favourable opinion from the West of Scotland Research Ethics Committee (REC) 3 (IRAS ID: 325848, REC reference: 23WS/0119, Protocol number GN22RE559).The results of the research will be disseminated through peer-reviewed publications and conferences, as well as to patient and public involvement groups who have been involved in the study and through knowledge exchange events.
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Grupos Focais , Fragilidade , Pesquisa Qualitativa , Humanos , Pessoal de Saúde/psicologia , Projetos de Pesquisa , Medição de Risco/métodos , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/psicologia , Entrevistas como Assunto , Multimorbidade , Atitude do Pessoal de Saúde , Tomada de Decisão Compartilhada , Insuficiência Renal/terapia , Adulto , Masculino , Múltiplas Afecções Crônicas/epidemiologia , Idoso , FemininoRESUMO
BACKGROUND: Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed 'treatment burden' and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective. METHODS AND FINDINGS: The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce. CONCLUSIONS: Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.
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Efeitos Psicossociais da Doença , Pesquisa Qualitativa , Acidente Vascular Cerebral/terapia , Humanos , Garantia da Qualidade dos Cuidados de SaúdeRESUMO
BACKGROUND: Treatment burden can be defined as the self-care practices that patients with chronic illness must perform to respond to the requirements of their healthcare providers, as well as the impact that these practices have on patient functioning and well being. Increasing levels of treatment burden may lead to suboptimal adherence and negative outcomes. Systematic review of the qualitative literature is a useful method for exploring the patient experience of care, in this case the experience of treatment burden. There is no consensus on methods for qualitative systematic review. This paper describes the methodology used for qualitative systematic reviews of the treatment burdens identified in three different common chronic conditions, using stroke as our exemplar. METHODS: Qualitative studies in peer reviewed journals seeking to understand the patient experience of stroke management were sought. Limitations of English language and year of publication 2000 onwards were set. An exhaustive search strategy was employed, consisting of a scoping search, database searches (Scopus, CINAHL, Embase, Medline & PsycINFO) and reference, footnote and citation searching. Papers were screened, data extracted, quality appraised and analysed by two individuals, with a third party for disagreements. Data analysis was carried out using a coding framework underpinned by Normalization Process Theory (NPT). RESULTS: A total of 4364 papers were identified, 54 were included in the review. Of these, 51 (94%) were retrieved from our database search. Methodological issues included: creating an appropriate search strategy; investigating a topic not previously conceptualised; sorting through irrelevant data within papers; the quality appraisal of qualitative research; and the use of NPT as a novel method of data analysis, shown to be a useful method for the purposes of this review. CONCLUSION: The creation of our search strategy may be of particular interest to other researchers carrying out synthesis of qualitative studies. Importantly, the successful use of NPT to inform a coding frame for data analysis involving qualitative data that describes processes relating to self management highlights the potential of a new method for analyses of qualitative data within systematic reviews.