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OBJECTIVES: To explore how healthcare practitioners (HCPs) made decisions about the implementation of digital health technologies (DHTs) in their clinical practice before and during the COVID-19 pandemic. DESIGN: A multimethods study, comprising semistructured interviews conducted prior to the COVID-19 pandemic, supplemented with an online survey that was conducted during the pandemic with a different sample, to ensure the qualitative findings remained relevant within the rapidly changing healthcare context. Participants were recruited through HCP networks, snowballing and social media. Data were analysed thematically. SETTING: Phone interviews and online survey. PARTICIPANTS: HCPs represented a range of professions from primary and secondary care across England, with varied socioeconomic deprivation. RESULTS: 24 HCPs were interviewed, and 16 HCPs responded to the survey. In the interviews, HCPs described three levels where decisions were made, which determined who would have access to what DHTs: health organisation, HCP and patient levels. These decisions resulted in the unequal implementation of DHTs across health services, created barriers for HCPs using DHTs in their practice and influenced HCPs' decisions on which patients to supply DHTs with. In the survey, HCPs described being provided support to overcome some of the barriers at the organisation and HCP level during the pandemic. However, they cited similar concerns to pre-pandemic about barriers patients faced using DHTs (eg, digital literacy). In the absence of centralised guidance on how to manage these barriers, health services made their own decisions about how to adapt their services for those who struggled with DHTs. CONCLUSIONS: Decision-making at the health organisation, HCP and patient levels influences inequalities in access to DHTs for HCPs and patients. The mobilisation of centralised information and resources during the pandemic can be viewed as good practice for reducing barriers to use of DHTs for HCPs. However, attention must also be paid to reducing barriers to accessing DHTs for patients.
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COVID-19 , Saúde Digital , Humanos , Pandemias , COVID-19/epidemiologia , Instalações de Saúde , Atenção Secundária à SaúdeRESUMO
BACKGROUND: People with dementia living at home represent a growing group of social care services users in England. Many are unable to complete questionnaires due to cognitive impairment. The ASCOT-Proxy is an adapted version of an established measure, ASCOT, which was developed as a way of collecting social care-related quality of life (SCRQoL) data from this group of service users, either alone or alongside the ASCOT-Carer, a measure of SCRQoL for unpaid carers. The ASCOT-Proxy includes two perspectives, the proxy-proxy perspective ('My opinion: What I think') and proxy-person perspective ('What I think the person I represent thinks'). We aimed to establish the feasibility, construct validity and reliability of the ASCOT-Proxy and ASCOT-Carer, with unpaid carers of people with dementia living at home unable to self-report. We also aimed to establish structural characteristics of the ASCOT-Proxy. METHODS: Cross-sectional data were collected using self-administered questionnaire (paper or online) among unpaid carers living in England between January 2020 and April 2021. Unpaid carers could take part if they supported someone living with dementia who was unable to self-complete a structured questionnaire. The person living with dementia or their unpaid carer had to use at least one social care service. We used the proportion of missing data to establish feasibility, ordinal exploratory factor analysis to establish structural characteristics, Zumbo's ordinal alpha for internal reliability, and hypothesis testing for construct validity. We also conducted Rasch analysis. RESULTS: We analysed data for 313 carers (62.4(± 12.0) years, 75.7% (N=237) females). We were able to calculate the ASCOT-Proxy-proxy overall score for 90.7% of our sample, the ASCOT-Proxy-person overall score for 88.8% of our sample and in case of the ASCOT-Carer for 99.7% of our sample. As there was an issue with structural characteristics of the ASCOT-Proxy-proxy we conducted Rasch, reliability and construct validity analysis for the ASCOT-Proxy-person and ASCOT-Carer only. CONCLUSIONS: This was a first study to explore psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer with unpaid carers of people with dementia living at home unable to self-report. There are some aspects of the psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer that warrant further investigation in future. Trial registration NA.
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Cuidadores , Demência , Feminino , Humanos , Cuidadores/psicologia , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Estudos Transversais , Estudos de Viabilidade , Inglaterra , Inquéritos e Questionários , Demência/psicologiaRESUMO
There are an estimated 2 million older carers, aged 65 or over, in the UK. Older carers are more likely to care for a co-resident spouse/partner, provide high-intensity support and have their own health problems. The literature suggests that a 'dyadic outcomes approach' to social care (i.e. services and support that seek to understand and improve the quality of life of the older carer and the person they support, individually and together) may be especially beneficial for older carers. Such an approach may be applied in needs assessment and review, service evaluation, planning and delivery, or commissioning. However, there is a paucity of evidence of its effectiveness and feasibility in practice. In this qualitative study, we explored views of social care professionals in England on supporting older carers, as well as the feasibility, potential benefits and challenges of applying a dyadic outcomes approach into policy and practice. Overall, 25 professionals were interviewed between January and July 2021, including social workers, team leads, managers, commissioners and other representatives from local authorities, care providers and carer organisations. Findings indicate that there is limited focus on the specific needs of older carers in practice. Participants recognised the potential benefits of a dyadic approach, including the development of a holistic view that enables an effective response to supporting quality of life, for both carer and care-recipient, and building trust when working to support the caring dyad. Barriers to applying a dyadic approach included data protection and sharing, both within and between organisations; required workforce skills, experience and knowledge; and insufficient and competition-oriented adult social care funding that discourages collaborations between agencies. Despite the potential of the approach to improve the effectiveness of support for older caring dyads, these challenges need to be recognised and addressed if it is to be implemented.
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Cuidadores , Qualidade de Vida , Adulto , Humanos , Apoio Social , Pesquisa Qualitativa , Avaliação das NecessidadesRESUMO
Older carers, aged 65 or over, may find it difficult to balance caring while maintaining their own health and quality of life (QoL). For older carers, especially, established approaches to separately identifying, assessing and addressing carers' and care-recipients' needs, may not fully consider the interwoven nature of caregiving relationships and the ways in which community-based social care services may impact the QoL of both parties. The purpose of this scoping review is to identify and synthesise what is already known about the QoL of older carers and care-recipients, considered together, which we refer to as 'dyadic QoL'; both in general, and with regard to the impact of community-based social care. We searched 16 electronic databases and grey literature in October and November 2020. A total 822 items were identified and reviewed based on the inclusion criteria: focusing on older carers and care-recipients from a dyadic perspective and their QoL or well-being, published since 2000 and in English. Fourteen papers were thematically analysed, and the findings were presented under two themes. First, the value of applying an overarching conceptual framework of 'interdependence theory' in understanding dyadic QoL, including two broad approaches: dyadic data analysis and the dynamics of caring relationships. Second, a number of papers highlighted the role of support from family, friends and neighbours and community-based social care services in promoting QoL outcomes of caring dyads. This review emphasised that considering the QoL of carers and care-recipients, together, would potentially improve the understanding of care needs, provision of care services and QoL outcomes. However, there is limited and fragmentary evidence about dyadic QoL or the impact of social care services on dyadic QoL outcomes. Future work is required to explore and evaluate the use of a dyadic approach in social care practice and research.
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Cuidadores , Qualidade de Vida , Humanos , Serviço Social , Apoio Social , AmigosRESUMO
BACKGROUND: Long-term care (LTC) workers are subjected to structural and inherent difficult conditions that are likely to impact their quality of life at work; however, no agreed scale measures it. This study aims to develop a scale to measure the work-related quality of life among LTC workers in England (CWRQoL). The study establishes the domains/sub-domains of CWRQoL, investigates the tool's utility and collates information on existing supporting strategies for CWRQoL. METHODS: We adopt a mixed-methods approach employing inductive/deductive processes at three stages: (1) a scoping review of the literature; (2) interviews and focus groups with frontline LTC workers, managers and LTC stakeholders; and (3) a content validity consensus survey. RESULTS: CWRQoL is composed of seven domains (and 23 sub-domains). Additional domains to those in the literature include financial wellbeing, sufficient time for building relations, managing grief and emotions associated with client death and end of life care. Stakeholders identified several benefits and challenges related to the CWRQoL tool's utility. COVID-19 significantly impacted LTC workers' mental wellbeing and spillover between work and home. CONCLUSIONS: The study highlighted the complex nature of CWRQoL and provided a solid ground for developing and validating a CWRQoL scale.
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COVID-19 , Assistência Terminal , Humanos , Assistência de Longa Duração , Qualidade de Vida , SARS-CoV-2RESUMO
The main aim of this scoping review was to understand how work-related quality of life (WRQoL) in adult social care has been defined and measured in the literature and to map key components of WRQoL among those working in adult social care and similar contexts. The scoping review included studies that: 1- focused on WRQoL/work-related wellbeing (and their synonyms); and 2- included adult social care or community health care. We searched existing evidence from November 2019 until July 2020 through an electronic literature search of eight major databases complemented by the grey literature, searching the reference lists and by contacting our existing network of experts in the field. In addition, we repeated the searches to identify any relevant literature published in 2021. Reporting followed the PRISMA Extension for Scoping Reviews (PRISMA-ScR) checklist. In total, we included 68 publications. These publications indicate that there is an absence of agreement on a definition and measurement of WRQoL in adult social care. Based on a thematic analysis we identified six key components of WRQoL: organisational characteristics; job characteristics; mental wellbeing and health; physical wellbeing and health; spill-over from work to home; and professional identity. In summary, at the moment, there is no agreement on what WRQoL is and how to measure it in adult social care. As a result, there is very limited evidence on how to improve WRQoL among people working in adult social care. However, this scoping review suggests that there are six key components of WRQoL that researchers may consider to include in their future studies.
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Qualidade de Vida , Apoio Social , Adulto , Lista de Checagem , Humanos , Grupos PopulacionaisRESUMO
People with dementia and their carers are a growing subgroup of people who use community-based social care. These services are designed to maintain people's quality of life while living at home. The ASCOT measure of social care-related quality of life (SCRQoL), designed to evaluate quality and effectiveness of social care, has been adapted for proxy-report when someone is unable to self-report. The ASCOT-Carer has been developed to measure carer's own SCRQoL. This study sought to establish the factors related to SCRQoL of people living with dementia (PLWD, proxy-reported by carers) and their carers. Data were collected via a self-administered postal or online survey of 313 carers in England, from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia at home, who was unable to self-complete questionnaires. The person living with dementia or their carer had to use at least one social care service, e.g. home care. We recruited participants via an online volunteer panel and NHS sites. Multiple regression was applied to explore the factors significantly related to ASCOT SCRQoL by self- and proxy-report. Key influences on carers' own SCRQoL were their health, financial difficulties associated with caring, and satisfaction with social care support. Inadequate home design was significantly negatively associated with SCRQoL for PLWD. The latter stages of the pandemic-related restrictions (the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers. The study offers insight into the factors associated with SCRQoL. In particular, the findings highlight the importance of adequate home design for people with dementia; satisfactory social care support and limiting any adverse financial impact of caring are important for carers. The findings indicate a negative effect of COVID restrictions on SCRQoL of people with dementia.
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COVID-19 , Demência , Cuidadores , Humanos , Qualidade de Vida , Apoio SocialRESUMO
Background: Measurement models inform the approach to assess a measure's validity and also how a measure is understood, applied and interpreted. With preference-based measures (PBMs), it is generally accepted that they are formative; however, if they are applied without preferences, they may be reflective, formative or mixed. In this study, we sought to empirically test whether the reflective, formative or mixed measurement model best describes PBMs of social care-related quality of life (SCRQoL) - specifically, the ASCOT and ASCOT-Carer. We also explored the network approach, as an alternative. Methods: ASCOT and ASCOT-Carer data were analyzed using confirmatory factor analysis and Multiple Indicators Multiple Causes models to test reflective, formative or mixed measurement models, respectively. Network analysis of partial correlations using the Gaussian graphical model was also conducted. Results: The results indicated that the reflective measurement model is the worst fit for ASCOT and ASCOT-Carer. The formative or mixed measurement models may apply to ASCOT. The mixed measurement model was the best fit for ASCOT-Carer. The network analysis indicated that the most important or influential items were Occupation and Personal cleanliness and comfort (ASCOT) and Time and space and Self-care (ASCOT-Carer). Conclusions: The ASCOT and ASCOT-Carer are best described as formative/mixed or mixed measurement models, respectively. These findings may guide the approach to the validation of cross-culturally adapted and translated versions. Specifically, we recommend that EFA be applied to establish structural characteristics, especially if the measure will be applied as a PBM and as a measure of SCRQoL. Network analysis may also provide further useful insights into structural characteristics.
For many people living with long-term health conditions or disabilities, community-based social care services (like, home care) enable them to maintain independence, stay connected, and to live well. For families and friends who care for someone ('carers'), these services may also help them. They may allow carers to continue in paid employment and to have time for hobbies, friendships, to stay healthy, and connect with others in a similar situation. An important question is what type(s) of community-based services, best support people and their carers. To find this out, we need a way of measuring the effect services have on people's lives. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that asks people about aspects of their life that might be affected by social care services (for example, having control over everyday life). This questionnaire has already been used by researchers and care providers to review how well social care services support people. There is also another version of the questionnaire called the ASCOT-Carer, which looks at aspects of life that are important to carers. There has been interest in culturally adapting and translating these measures into other languages. However, there are different ways of establishing how well a translated version relates back to the original. This is important to make sure that the new version is measuring what we expect it to. In this paper, we compare different ways of understanding the information collected using the ASCOT and ASCOT-Carer in England. This will inform how to approach the testing of ASCOT (and other similar measures) that have been translated into new languages. It also helps us to understand how different aspects of life that are supported by social care services are related to each other. This can inform our understanding of people's needs and how to best support them.
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BACKGROUND AND OBJECTIVES: This systematic review aimed to synthesize and quantify the associations of awareness of age-related change (AARC) with emotional well-being, physical well-being, and cognitive functioning. RESEARCH DESIGN AND METHODS: We conducted a systematic review with a correlational random effects meta-analysis. We included quantitative studies, published from January 1, 2009 to October 3, 2018, exploring associations between AARC and one or more of the following outcomes: emotional well-being, physical well-being, and cognitive functioning. We assessed heterogeneity (I2) and publication bias. RESULTS: We included 12 studies in the review, 9 exploring the association between AARC and emotional well-being and 11 exploring the association between AARC and physical well-being. No study explored the association between AARC and cognitive functioning. Six articles were included in the meta-analysis. We found a moderate association between a higher level of AARC gains and better emotional well-being (r = .33; 95% CI 0.18, 0.47; p <.001; I2 = 76.01) and between a higher level of AARC losses and poorer emotional (r = -.31; 95% CI -0.38, -0.24; p < .001; I2 = 0.00) and physical well-being (r = -.38; 95% CI -0.51, -0.24; p < .001; I2 = 83.48). We found a negligible association between AARC gains and physical well-being (r = .08; 95% CI 0.02, 0.14; p < .122; I2 = 0.00). Studies were of medium to high methodological quality. DISCUSSION AND IMPLICATIONS: There is some indication that AARC gains and losses can play a role in emotional well-being and that AARC losses are associated with physical well-being. However, the number of included studies is limited and there was some indication of heterogeneity. PROSPERO REGISTRATION: CRD42018111472.
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Envelhecimento , Conscientização , Cognição , Emoções , Humanos , TempoRESUMO
OBJECTIVE: To synthesize the literature on the effect of provision of personalised cancer risk information to individuals at population level risk on accuracy of risk perception and psychological responses. METHODS: A systematic review and random effects meta-analysis of articles published from 01/01/2000 to 01/07/2017. RESULTS: We included 23 studies. Immediately after provision of risk information 87% of individuals were able to recall the absolute risk estimate. Less than half believed that to be their risk, with up to 71% believing their risk to be higher than the estimate. Provision of risk information increased accuracy of perceived absolute risk immediately after risk information compared with no information (pooled RR 4.16 (95%CI 1.28-13.49), 3 studies). There was no significant effect on comparative risk accuracy (pooled RR 1.39 (0.72-2.69), 2 studies) and either no change or a reduction in cancer worry, anxiety and fear. CONCLUSION: These findings highlight the complex cognitive processes involved in the conceptualisation of risk. PRACTICE IMPLICATIONS: Individuals who appear to understand and are able to recall risk information most likely do not believe it reflects their own risk.
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Ansiedade , Neoplasias , Humanos , Percepção , RiscoRESUMO
OBJECTIVE: To determine whether provision of web-based lifestyle advice and coronary heart disease risk information either based on phenotypic characteristics or phenotypic plus genetic characteristics affects changes in objectively measured health behaviours. METHODS: A parallel-group, open randomised trial including 956 male and female blood donors with no history of cardiovascular disease (mean [SD] age=56.7 [8.8] years) randomised to four study groups: control group (no information provided); web-based lifestyle advice only (lifestyle group); lifestyle advice plus information on estimated 10-year coronary heart disease risk based on phenotypic characteristics (phenotypic risk estimate) (phenotypic group) and lifestyle advice plus information on estimated 10-year coronary heart disease risk based on phenotypic (phenotypic risk estimate) and genetic characteristics (genetic risk estimate) (genetic group). The primary outcome was change in physical activity from baseline to 12 weeks assessed by wrist-worn accelerometer. RESULTS: 928 (97.1%) participants completed the trial. There was no evidence of intervention effects on physical activity (difference in adjusted mean change from baseline): lifestyle group vs control group 0.09 milligravity (mg) (95% CI -1.15 to 1.33); genetic group vs phenotypic group -0.33 mg (95% CI -1.55 to 0.90); phenotypic group and genetic group vs control group -0.52 mg (95% CI -1.59 to 0.55) and vs lifestyle group -0.61 mg (95% CI -1.67 to 0.46). There was no evidence of intervention effects on secondary biological, emotional and health-related behavioural outcomes except self-reported fruit and vegetable intake. CONCLUSIONS: Provision of risk information, whether based on phenotypic or genotypic characteristics, alongside web-based lifestyle advice did not importantly affect objectively measured levels of physical activity, other health-related behaviours, biological risk factors or emotional well-being. TRIAL REGISTRATION NUMBER: ISRCTN17721237; Pre-results.
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Doença das Coronárias/prevenção & controle , Aconselhamento Diretivo , Comportamentos Relacionados com a Saúde , Internet , Estilo de Vida , Educação de Pacientes como Assunto , Doença das Coronárias/genética , Feminino , Genótipo , Humanos , Masculino , Pessoa de Meia-Idade , Fenótipo , Fatores de Risco , Método Simples-CegoRESUMO
BACKGROUND: Understanding the policy context and how policy is implemented at the local and clinical level is an important precursor to developing preventive strategies focusing on dementia risk reduction in primary healthcare settings. OBJECTIVE: Using England as a case study, we review policies and strategies relevant to dementia prevention from the national to local level and how these are translated into primary healthcare services. METHODS: We conducted a scoping review covering: 1) identification of national, regional, and local policies and strategies that include dementia prevention; 2) identification of national guidelines for implementing dementia prevention at the clinical level; and 3) evaluation of the implementation of these at the clinical level. RESULTS: Dementia prevention is addressed in national policy, and this filters through to regional and local levels. Focus on dementia prevention is limited and variable. Reference to modifiable risk factors is associated with other non-communicable diseases, placing less emphasis on factors more dementia specific. Evidence of implementation of dementia prevention policies at the clinical level is limited and inconsistent. Available evidence suggests messages about dementia prevention may best be delivered through primary healthcare services such as the National Health Service (NHS) Health Check. CONCLUSION: The limitations identified in this review could be addressed through development of a national policy focused specifically on dementia prevention. This could provide a platform for increasing knowledge and understanding among the general population and healthcare professionals. It would be important for such a policy to cover the full range of modifiable risk factors relevant to dementia.
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Demência/prevenção & controle , Prevenção Primária , Inglaterra , Política de Saúde , Humanos , Atenção Primária à Saúde , Comportamento de Redução do Risco , Medicina EstatalRESUMO
BACKGROUND: There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to 'live well' vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs. METHODS: IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia. DISCUSSION: IDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.
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Cuidadores/psicologia , Demência/psicologia , Demência/terapia , Qualidade de Vida , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Protocolos Clínicos , Feminino , Serviços de Saúde/estatística & dados numéricos , Necessidades e Demandas de Serviços de Saúde , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Reino UnidoRESUMO
OBJECTIVE: To provide a comprehensive review of the impact on intention to change health-related behaviours and health-related behaviours themselves, including screening uptake, of interventions incorporating information about cancer risk targeted at the general adult population. DESIGN: A systematic review and random-effects meta-analysis. DATA SOURCES: An electronic search of MEDLINE, EMBASE, CINAHL and PsycINFO from 1 January 2000 to 1 July 2017. INCLUSION CRITERIA: Randomised controlled trials of interventions including provision of a personal estimate of future cancer risk based on two or more non-genetic variables to adults recruited from the general population that include at least one behavioural outcome. RESULTS: We included 19 studies reporting 12 outcomes. There was significant heterogeneity in interventions and outcomes between studies. There is evidence that interventions incorporating personalised cancer risk information do not affect intention to attend or attendance at screening (relative risk 1.00 (0.97-1.03)). There is limited evidence that they increase smoking abstinence, sun protection, adult skin self-examination and breast examination, and decrease intention to tan. However, they do not increase smoking cessation, parental child skin examination or intention to protect skin. No studies assessed changes in diet, alcohol consumption or physical activity. CONCLUSIONS: Interventions incorporating personalised cancer risk information do not affect uptake of screening, but there is limited evidence of effect on some health-related behaviours. Further research, ideally including objective measures of behaviour, is needed before cancer risk information is incorporated into routine practice for health promotion in the general population.
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Comportamentos Relacionados com a Saúde , Promoção da Saúde/métodos , Comportamentos de Risco à Saúde , Intenção , Neoplasias/prevenção & controle , Adulto , Dieta , Exercício Físico , Humanos , Educação de Pacientes como Assunto , Prevenção Primária , Ensaios Clínicos Controlados Aleatórios como Assunto , Abandono do Hábito de Fumar/estatística & dados numéricosRESUMO
OBJECTIVE: To identify the proportion of individuals with an accurate perception of their risk of type 2 diabetes (T2D) prior to, immediately after and eight weeks after receiving a personalised risk estimate. Additionally, we aimed to explore what factors are associated with underestimation and overestimation immediately post-intervention. METHODS: Cohort study based on the data collected in the Diabetes Risk Communication Trial. We included 379 participants (mean age 48.9 (SD 7.4) years; 55.1% women) who received a genotypic or phenotypic risk estimate for T2D. RESULTS: While only 1.3% of participants perceived their risk accurately at baseline, this increased to 24.7% immediately after receiving a risk estimate and then dropped to 7.3% at eight weeks. Those who overestimated their risk at baseline continued to overestimate it, whereas those who underestimated their risk at baseline improved their risk accuracy. We did not identify any other characteristics associated with underestimation or overestimation immediately after receiving a risk estimate. CONCLUSION: Understanding a received risk estimate is challenging for most participants with many continuing to have inaccurate risk perception after receiving the estimate. PRACTICE IMPLICATIONS: Individuals who overestimate or underestimate their T2D risk before receiving risk information might require different approaches for altering their risk perception.
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Diabetes Mellitus Tipo 2/prevenção & controle , Diabetes Mellitus Tipo 2/psicologia , Comportamentos Relacionados com a Saúde , Medição de Risco/métodos , Adulto , Idoso , Estudos de Coortes , Feminino , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Atividade Motora , Percepção , Fatores de Risco , Fatores Socioeconômicos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: It has been suggested that interactions between patients and practitioners in primary care have the potential to delay progression of complications in type 2 diabetes. However, as primary care faces greater pressures, patient experiences of patient-practitioner interactions might be changing. AIM: To explore the views of patients with type 2 diabetes on factors that are of significance to them in patient-practitioner interactions in primary care after diagnosis, and over the last 10 years of living with the disease. DESIGN AND SETTING: A longitudinal qualitative analysis over 10 years in UK primary care. METHOD: The study was part of a qualitative and quantitative examination of patient experience within the existing ADDITION-Cambridge and ADDITION-Plus trials from 2002 to 2016. The researchers conducted a qualitative descriptive analysis of free-text comments to an open-ended question within the CARE measure questionnaire at 1 and 10 years after diagnosis with diabetes. Data were analysed cross-sectionally at each time point, and at an individual level moving both backwards and forwards between time points to describe emergent topics. RESULTS: At the 1-year follow-up, 311 out of 1106 (28%) participants had commented; 101 out of 380 (27%) participants commented at 10-year follow-up; and 46 participants commented at both times. Comments on preferences for face-to-face contact, more time with practitioners, and relational continuity of care were more common over time. CONCLUSION: This study highlights issues related to the wider context of interactions between patients and practitioners in the healthcare system over the last 10 years since diagnosis. Paradoxically, these same aspects of care that are valued over time from diagnosis are also increasingly unprotected in UK primary care.
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Continuidade da Assistência ao Paciente/estatística & dados numéricos , Diabetes Mellitus Tipo 2/terapia , Satisfação do Paciente/estatística & dados numéricos , Assistência Centrada no Paciente/normas , Atenção Primária à Saúde/normas , Adulto , Progressão da Doença , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados da Assistência ao Paciente , Relações Médico-Paciente , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
BACKGROUND: It is estimated that nearly 600,000 cancer cases in the UK could have been avoided in the past five years if people had healthier lifestyles. A number of theories of behaviour change suggest that before people will change health behaviours, they must accept that a risk applies to them. This study aimed to explore the views of the public on receiving personalised cancer risk information and the potential for that information to motivate behaviour change. METHODS: We conducted 27 interviews with members of the public (mean age 49 ± 23 years). Each participant completed a questionnaire to allow calculation of their risk of developing the most common cancers (10 for women, 8 for men). During the interviews we presented their risk using a web-based tool developed for the study and discussions covered their views on receiving that information. Each interview was audio-recorded and then analysed using thematic analysis. RESULTS: Participants generally viewed the concept of personalised cancer risk positively. The first reaction of almost all when presented with their 10-year risk of an individual cancer without any further context was that it was low and not concerning. Views on what constituted a high risk ranged widely, from 0.5 to 60%. All felt seeing the impact of changes in lifestyle was helpful. For some this led to intentions to change behaviour, but reductions in risk were not always motivating as the risks were considered low and differences small. CONCLUSIONS: Provision of personalised cancer risk was well received and may be a useful addition to other cancer prevention initiatives. Further work is needed in particular to develop ways to present cancer risk that reflect the general perception of what constitutes a risk high enough to motivate behaviour change and help patients contextualise a less well known health risk by providing a frame of reference.
Assuntos
Atitude Frente a Saúde , Comunicação em Saúde/métodos , Neoplasias , Medicina de Precisão , Risco , Adulto , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Intenção , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Motivação , Pesquisa Qualitativa , Comportamento de Redução do Risco , Inquéritos e Questionários , Reino Unido , Adulto JovemRESUMO
BACKGROUND: Web-based interventions provide the opportunity to combine the tailored approach of face-to-face interventions with the scalability and cost-effectiveness of public health interventions. This potential is often limited by low engagement. A number of studies have described the characteristics of individuals who engage more in Web-based interventions but few have explored the reasons for these variations. OBJECTIVE: We aimed to explore individual-level factors associated with different degrees of engagement with a Web-based behavior change intervention following provision of coronary heart disease (CHD) risk information, and the barriers and facilitators to engagement. METHODS: This study involved the secondary analysis of data from the Information and Risk Modification Trial, a randomized controlled trial of a Web-based lifestyle intervention alone, or alongside information on estimated CHD risk. The intervention consisted of three interactive sessions, each lasting up to 60 minutes, delivered at monthly intervals. Participants were characterized as high engagers if they completed all three sessions. Thematic analysis of qualitative data from interviews with 37 participants was combined with quantitative data on usage of the Web-based intervention using a mixed-methods matrix, and data on the views of the intervention itself were analyzed across all participants. RESULTS: Thirteen participants were characterized as low engagers and 24 as high engagers. There was no difference in age (P=.75), gender (P=.95), or level of risk (P=.65) between the groups. Low engagement was more often associated with: (1) reporting a negative emotional reaction in response to the risk score (P=.029), (2) perceiving that the intervention did not provide any new lifestyle information (P=.011), and (3) being less likely to have reported feeling an obligation to complete the intervention as part of the study (P=.019). The mixed-methods matrix suggested that there was also an association between low engagement and less success with previous behavior change attempts, but the statistical evidence for this association was weak (P=.16). No associations were seen between engagement and barriers or facilitators to health behavior change, or comments about the design of the intervention itself. The most commonly cited barriers related to issues with access to the intervention itself: either difficulties remembering the link to the site or passwords, a perceived lack of flexibility within the website, or lack of time. Facilitators included the nonjudgmental presentation of lifestyle information, the use of simple language, and the personalized nature of the intervention. CONCLUSIONS: This study shows that the level of engagement with a Web-based intervention following provision of CHD risk information is not influenced by the level of risk but by the individual's response to the risk information, their past experiences of behavior change, the extent to which they consider the lifestyle information helpful, and whether they felt obliged to complete the intervention as part of a research study. A number of facilitators and barriers to Web-based interventions were also identified, which should inform future interventions.
Assuntos
Doença das Coronárias/psicologia , Comportamentos Relacionados com a Saúde , Internet/estatística & dados numéricos , Adulto , Feminino , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Fatores de RiscoRESUMO
Several multivariable risk prediction models have been developed to asses an individual's risk of developing specific cancers. Such models can be used in a variety of settings for prevention, screening, and guiding investigations and treatments. Models aimed at predicting future disease risk that contains lifestyle factors may be of particular use for targeting health promotion activities at an individual level. This type of cancer risk prediction is not yet available in the UK. We have adopted the approach used by the well-established U.S.-derived "YourCancerRisk" model for use in the UK population, which allow users to quantify their individual risk of developing individual cancers relative to the population average risk. The UK version of "YourCancerRisk" computes 10-year cancer risk estimates for 11 cancers utilizing UK figures for prevalence of risk factors and cancer incidence. Because the prevalence of risk factors and the incidence rates for cancer are different between the U.S. and the UK population, this UK model provides more accurate estimates of risks for a UK population. Using an example of breast cancer and data from UK Biobank cohort, we demonstrate that the individual risk factor estimates are similar for the U.S. and UK populations. Assessment of the performance and validation of the multivariate model predictions based on a binary score confirm the model's applicability. The model can be used to estimate absolute and relative cancer risk for use in Primary Care and community settings and is being used in the community to guide lifestyle change. Cancer Prev Res; 10(7); 421-30. ©2017 AACR.