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1.
Artigo em Inglês | MEDLINE | ID: mdl-38063533

RESUMO

Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed, drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers, and young adult carers. Data collection involved semi-structured interviews (n = 17) and a participatory 2-h workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: a "whole-family approach" (as a pathway to identification), "not a carer" (self/family identification), a postcode lottery (high variability of support services), tailored support that is "fit for purpose", and the "power" of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase the identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not "fit for purpose".


Assuntos
Cuidadores , Demência , Humanos , Coleta de Dados
2.
BMJ Open ; 13(2): e064169, 2023 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-36725099

RESUMO

OBJECTIVES: Motor neuron disease (MND) is an incurable progressive neurodegenerative disease with limited treatment options. There is a pressing need for innovation in identifying therapies to take to clinical trial. Here, we detail a systematic and structured evidence-based approach to inform consensus decision making to select the first two drugs for evaluation in Motor Neuron Disease-Systematic Multi-arm Adaptive Randomised Trial (MND-SMART: NCT04302870), an adaptive platform trial. We aim to identify and prioritise candidate drugs which have the best available evidence for efficacy, acceptable safety profiles and are feasible for evaluation within the trial protocol. METHODS: We conducted a two-stage systematic review to identify potential neuroprotective interventions. First, we reviewed clinical studies in MND, Alzheimer's disease, Huntington's disease, Parkinson's disease and multiple sclerosis, identifying drugs described in at least one MND publication or publications in two or more other diseases. We scored and ranked drugs using a metric evaluating safety, efficacy, study size and study quality. In stage two, we reviewed efficacy of drugs in MND animal models, multicellular eukaryotic models and human induced pluripotent stem cell (iPSC) studies. An expert panel reviewed candidate drugs over two shortlisting rounds and a final selection round, considering the systematic review findings, late breaking evidence, mechanistic plausibility, safety, tolerability and feasibility of evaluation in MND-SMART. RESULTS: From the clinical review, we identified 595 interventions. 66 drugs met our drug/disease logic. Of these, 22 drugs with supportive clinical and preclinical evidence were shortlisted at round 1. Seven drugs proceeded to round 2. The panel reached a consensus to evaluate memantine and trazodone as the first two arms of MND-SMART. DISCUSSION: For future drug selection, we will incorporate automation tools, text-mining and machine learning techniques to the systematic reviews and consider data generated from other domains, including high-throughput phenotypic screening of human iPSCs.


Assuntos
Doença dos Neurônios Motores , Humanos , Consenso , Células-Tronco Pluripotentes Induzidas , Doença dos Neurônios Motores/tratamento farmacológico , Ensaios Clínicos Controlados Aleatórios como Assunto
3.
Artigo em Inglês | MEDLINE | ID: mdl-36231803

RESUMO

The COVID-19 pandemic has exposed how our global societies rely upon the care and support of informal (unpaid) caregivers: in the UK alone, there are an estimated 6.5 million informal carers. The caring role is not just precarious, it is often associated with high levels of stress, poor/deteriorating health and crisis points (hospitalisations, worsening of health). Fittingly, there has been much research in recent years focusing on mental health supports. A lesser explored area is physical health and physical activity. To address this, we conducted a real-world feasibility, usability and acceptability study of a novel codesigned digital health app for caregivers to improve levels of physical activity. Our study was designed to test the prototype app use for three weeks, following participants across questionnaires/in app data/qualitative data. Our findings (from 27 caregivers) highlights key knowledge gaps around physical activity-national guidelines were not reaching populations studies and behavioural change techniques hold promise to help support caregivers in the longer term. Our collective results support the acceptability, usability and feasibility of the Carefit app and warrant further investigation.


Assuntos
COVID-19 , Aplicativos Móveis , COVID-19/epidemiologia , Cuidadores/psicologia , Exercício Físico , Estudos de Viabilidade , Humanos , Pandemias , Smartphone
4.
J Med Internet Res ; 24(9): e39681, 2022 09 06.
Artigo em Inglês | MEDLINE | ID: mdl-36066928

RESUMO

BACKGROUND: Digital innovations are yet to make real impacts in the care home sector despite the considerable potential of digital health approaches to help with continued staff shortages and to improve quality of care. To understand the current landscape of digital innovation in long-term care facilities such as nursing and care homes, it is important to find out which clinical decision support tools are currently used in long-term care facilities, what their purpose is, how they were developed, and what types of data they use. OBJECTIVE: The aim of this review was to analyze studies that evaluated clinical decision support tools in long-term care facilities based on the purpose and intended users of the tools, the evidence base used to develop the tools, how the tools are used and their effectiveness, and the types of data the tools use to contribute to the existing scientific evidence to inform a roadmap for digital innovation, specifically for clinical decision support tools, in long-term care facilities. METHODS: A review of the literature published between January 1, 2010, and July 21, 2021, was conducted, using key search terms in 3 scientific journal databases: PubMed, Cochrane Library, and the British Nursing Index. Only studies evaluating clinical decision support tools in long-term care facilities were included in the review. RESULTS: In total, 17 papers were included in the final review. The clinical decision support tools described in these papers were evaluated for medication management, pressure ulcer prevention, dementia management, falls prevention, hospitalization, malnutrition prevention, urinary tract infection, and COVID-19 infection. In general, the included studies show that decision support tools can show improvements in delivery of care and in health outcomes. CONCLUSIONS: Although the studies demonstrate the potential of positive impact of clinical decision support tools, there is variability in results, in part because of the diversity of types of decision support tools, users, and contexts as well as limited validation of the tools in use and in part because of the lack of clarity in defining the whole intervention.


Assuntos
COVID-19 , Assistência de Longa Duração , Adulto , COVID-19/prevenção & controle , Hospitalização , Humanos , Casas de Saúde
5.
J Alzheimers Dis ; 90(2): 513-528, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36120780

RESUMO

BACKGROUND: Dementia poses significant and sustained challenges to global society. Diagnosis can lead to increased feelings of loneliness and social isolation. People with dementia living alone are particularly at risk. Considering the growing number of technologies proposed to aid people with dementia address social isolation and loneliness, we reviewed the existing literature. OBJECTIVE: To collate and summarize current evidence for digital technologies to prevent social isolation and loneliness for people with dementia. METHODS: Following the PRISMA guidelines, we systematically searched five databases to identify studies of digital technologies designed to support or prevent social isolation or loneliness for people with dementia. Pre-specified outcomes included social isolation, loneliness, and quality of life. We used deductive thematic analysis to synthesize the major themes emerging from the studies. RESULTS: Ten studies met our inclusion criteria where all studies reported improvements in quality of life and seven reported benefits regarding social inclusion or a reduction in loneliness. Technologies were varied across purpose, delivery format, theoretical models, and levels of personalization. Two studies clearly described the involvement of people with dementia in the study design and five technologies were available outside the research context. CONCLUSION: There is limited- but increasing- evidence that technologies hold potential to improve quality of life and reduce isolation/loneliness for people with dementia. Results presented are largely based in small-scale research studies. Involvement of people with dementia was limited and few research concepts are reaching implementation. Closer collaboration with people with dementia to provide affordable, inclusive, and person-centered solutions is urgently required.


Assuntos
Demência , Solidão , Humanos , Tecnologia Digital , Qualidade de Vida , Isolamento Social
6.
BMJ Open ; 12(9): e064314, 2022 09 21.
Artigo em Inglês | MEDLINE | ID: mdl-36130751

RESUMO

INTRODUCTION: In the UK, National Health Service (NHS) guidelines recommend that informal carers of people living with dementia should be offered training to help them develop care skills and manage their own physical and mental health. The WHO recommends access to affordable, proven, well-designed, online technologies for education, skills training and support for dementia carers. In response to these recommendations, this multisite randomised controlled trial (RCT) is the first study in the UK to evaluate the clinical and cost-effectiveness of an online support programme developed by the WHO called 'iSupport for dementia carers'. METHODS AND ANALYSIS: 350 informal carers (age 18+ years) living in Britain who self-identify as experiencing stress and depression will be recruited. They will be randomised to receive 'iSupport', or standardised information about caring for someone with dementia (control-comparison). Data will be collected via videoconferencing (eg, Zoom) or telephone interview at baseline, 3 months and 6 months. Intention-to-treat analysis will ascertain effectiveness in the primary outcomes (distress and depression) and combined cost, and quality-adjusted life-year data will be used to assess cost-effectiveness compared with usual care from a public sector and wider societal perspective. A mixed-methods process evaluation with a subgroup of carers in the intervention (~N=50) will explore the barriers and facilitators to implementing 'iSupport'. A non-randomised feasibility study will adapt 'iSupport' for young carers (n=38 participants, age 11-17 years). ETHICS AND DISSEMINATION: The research plan was scrutinised by National Institute for Health Research reviewers ahead of funding being awarded. Ethical approval was granted by Bangor University's School of Health and Medical Sciences Academic Ethics Committee, reference number 2021-16915. Dissemination plans include delivering events for stakeholders, social media, a project website, developing policy briefings, presenting at conferences and producing articles for open access publications. TRIAL REGISTRATION NUMBER: ISRCTN17420703.


Assuntos
Demência , Telemedicina , Adolescente , Cuidadores/psicologia , Criança , Análise Custo-Benefício , Estudos de Viabilidade , Humanos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
7.
JMIR Aging ; 5(1): e15413, 2022 Jan 27.
Artigo em Inglês | MEDLINE | ID: mdl-35084339

RESUMO

BACKGROUND: There are approximately 6.5 million informal (unpaid) caregivers in the United Kingdom. Each caregiver plays a critical role in the society, supporting the health and well-being of those who are ill, disabled, or older and who need frequent support. Digital technologies are becoming a ubiquitous part of everyday life for many, but little is known about the real-world impact of technology for those in a caring role, including the abilities of technologies to address the mental and physical impacts of caregiving. OBJECTIVE: This study aims to understand the current and future technology use of caregivers, including digital technologies used to care for themselves and the person they look after. METHODS: We codeveloped a wide range of questions with caregivers and care professionals and delivered this survey both on the web and in paper format (eg, using social networks such as Twitter alongside in-person events). Questions were focused on providing care and looking after caregiver health and well-being. Analyses focused on both quantitative outcomes (frequency counts and Likert questions) and explored free text entries (thematic analysis). RESULTS: From 356 respondents, we identified that caregivers were receptive to, and largely positive about current and future use of technology both for their own care and their caring role (eg, checking in from distance). There were notable concerns, including the risk that technology could replace human contact. We identified several key areas for future work, including communication with health and social care professionals, and the potential for technology to help caregivers with their own health. We also identified several stakeholders (eg, care workers, pharmacy staff, and general practitioners) who could act as suitable points for technology signposting and support. CONCLUSIONS: Caregivers are a transient, often difficult to reach population, and this work has collated a large body of knowledge across a diverse group of individuals. Many caregivers, like the rest of society, are realizing the benefits of using everyday technology to help deliver care. It is clear that there is already a high level of dependency on technologies, where future expectations will grow. However, many barriers to digital technology use remain, including a lack of ongoing technology support. Preventive measures linked to technology that can help look after a caregiver's own health appear acceptable, particularly for communicative tools. This collated caregiver knowledge is a call for all stakeholders-academics, policy makers, and practitioners-to take note of these specific challenges, and to ensure that caregiver voices are both heard and fully integrated within the emerging digital health agenda.

8.
Artigo em Inglês | MEDLINE | ID: mdl-36612450

RESUMO

Young dementia carers need to be recognised and supported in their role. They need help to understand the illness, what changes are expected and how it can affect their family member. Many support services, partly due to the COVID pandemic, have moved online and have been shown to be acceptable as they are low cost and reduce access barriers. iSupport is an evidence-informed e-health training programme developed by the World Health Organization (WHO) to support adult dementia carers. This paper reports on the co-design of an adapted version of iSupport for young carers. A theoretically driven co-design approach, drawing on the lived experiences of young dementia carers and experts who work with this target group was followed. As a result of this study iSupport for Young Carers was created. It is the first e-health intervention of its kind and aims to support the mental health, knowledge and skills of young dementia carers. In turn, it could improve the quality of the support that service providers can offer, and this can result in increased levels of identification of these young people. The work presented also provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.


Assuntos
COVID-19 , Demência , Telemedicina , Adulto , Humanos , Adolescente , Cuidadores/psicologia , COVID-19/epidemiologia , Saúde Mental
9.
Artigo em Inglês | MEDLINE | ID: mdl-34886044

RESUMO

Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations. The aim of this study was to explore what a future roadmap for innovation could look like through a multi-stakeholder consultation and evaluation. An online survey was developed and distributed through convenience sampling, targeting both the informal caregiver and professionals/innovators interested in the caregiver demographic. Data were analysed using both quantitative (summary statistics) and qualitative (inductive thematic analysis) methods in order to develop recommendations for future multi-stakeholder collaboration and meaningful innovation. The survey collected 174 responses from 112 informal caregivers and 62 professionals/innovators. Responses across these stakeholder groups identified that there is currently a missed opportunity to harness the value of the voice of the caregiver demographic. Although time and accessibility issues are considerable barriers to engagement with this stakeholder group, respondents were clear that regular contributions, ideally no more than 20 to 30 min a month could provide a realistic route for input, particularly through online approaches supported by community-based events. In conclusion, the landscape of digital health and wellness is becoming ever more sophisticated, where both industrial and academic innovators could establish new routes to identify, reach, inform, signpost, intervene and support vital and vulnerable groups such as the caregiver demographic. Here, the findings from a consultation with caregivers and professionals interested in informal caring are presented to help design the first stages of a roadmap through identifying priorities and actions that could help accelerate future research and policy that will lead to meaningful and innovative solutions.


Assuntos
COVID-19 , Cuidadores , Humanos , Pandemias , Qualidade de Vida , Encaminhamento e Consulta , SARS-CoV-2
10.
JMIR Form Res ; 5(10): e27358, 2021 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-34406969

RESUMO

BACKGROUND: Informal caregivers, or carers (unpaid family members and friends), are instrumental to millions worldwide for the ongoing delivery of health and well-being needs. The risk of crisis points (eg, hospitalizations) for caregivers increases with the absence of physical activity. The COVID-19 pandemic is highly likely to have increased the risk of crisis points for caregivers by increasing the amount of time spent indoors due to shielding and lockdown restrictions. Thus, accessible evidence-based tools to facilitate physical activity for caregivers indoors are urgently needed. OBJECTIVE: The aim of this study was to co-design and develop a novel mobile app to educate and support carers in the undertaking of regular physical activity at home during and beyond COVID-19 restrictions via integration of the transtheoretical model of behavior change and UK physical activity guidelines. METHODS: We co-designed a mobile app, "CareFit," by directly involving caregivers, health care professionals, and social care professionals in the requirements, capturing, and evaluation phases of three Agile Scrum design and development sprints. Seven participants representing multistakeholder views took part in three co-design sessions, each of which was followed by a development sprint. Requirements for CareFit were grounded in a combination of behavioral change science and UK government guidelines for physical activity. RESULTS: Participants identified different barriers and enablers to physical activity, such as a lack of time, recognition of existing activities, and concerns regarding safely undertaking physical activity. Requirements analysis highlighted the importance of simplicity in design and a need to anchor development around the everyday needs of caregivers (eg, easy-to-use video instructions). Our final prototype app integrated guidance for undertaking physical activity at home through educational, physical activity, and communication components. CONCLUSIONS: Integrating government guidelines with models of behavioral change into a mobile app to support the physical activity of carers is novel. We found that integrating core physical activity guidelines into a co-designed smartphone app with functionality such as a weekly planner and educational material for users is feasible. This work holds promise to fill the gap of effective physical activity solutions for caregivers both during and beyond the COVID-19 pandemic. Further work is now needed to explore the feasibility, acceptability, and usability of the approach in real-world settings.

11.
Semin Oncol Nurs ; 36(6): 151088, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33229183

RESUMO

OBJECTIVE: To describe the current challenges of family caregivers during and beyond the COVID-19 pandemic, the need for future digital innovations including involvement from professional nursing roles. DATA SOURCES: Review of recent literature from PubMed and relevant health and care reports. CONCLUSION: The COVID-19 pandemic has caused monumental disruption to health care delivery and care. Caregivers face unprecedented levels of uncertainty: both for the people they care for and for their own health and well-being. Given that many carers face poor health and well-being, there is a significant risk that health inequalities will be increased by this pandemic, particularly for high-risk groups. Innovations including those supported and delivered by digital health could make a significant difference but careful planning and implementation is a necessity for widespread implementation. IMPLICATIONS FOR NURSING PRACTICE: Carers need to be championed in the years ahead to ensure they do not become left at the "back of the queue" for health and well-being equity. This situation has been exacerbated by the COVID-19 pandemic. Disruptive change to health and social care is now required where digital health solutions hold considerable promise, yet to be fully realized.


Assuntos
Cuidadores/organização & administração , Tecnologia Digital/organização & administração , Apoio Social , Telemedicina/organização & administração , Atitude Frente a Saúde , Equidade em Saúde , Humanos , Pandemias/prevenção & controle
12.
J Am Med Dir Assoc ; 19(3): 200-206.e1, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29306605

RESUMO

INTRODUCTION: Dementia poses a considerable socioeconomic burden to society. On a global scale, family and other unpaid care predominates. Supporting caregivers is crucial, but scalable interventions are currently lacking. Because a growing number of studies have suggested that online training and support programs hold considerable promise for scaling up, we reviewed existing literature. METHODS: We systematically searched 6 databases to identify studies of Internet-based interventions designed to train and support caregivers of people with dementia, and we formally assessed risk of bias. Our prespecified primary outcomes of interest included both mental health and caregiver burden/perceived stress. Our secondary outcomes of interest included knowledge, quality of life of caregivers, quality of care, caregiver response to challenging behaviors, coping, and self-efficacy. RESULTS: Eight randomized control trials met our inclusion criteria involving over 900 participants. The content and structure of Internet-based interventions, outcome measures, and duration differed markedly, and selection, performance, and reporting biases were varied and on occasion of concern. Six studies reported outcomes in caregivers' mental health outcomes, 3 studies reported burden outcomes. Three studies reported knowledge skills, quality of life and reaction to challenging behaviours, whereas 2 studies reported changes in coping outcomes and self-efficacy. No studies reported outcomes on quality of care. DISCUSSION: Although there is some evidence that Internet-based interventions can improve mental health outcomes for informal caregivers of people with dementia, marked methodological diversity across studies prevented the robust pooling of the results. A concerted and cohesive approach from all stakeholders is now required to help realize the full potential of this emerging field.


Assuntos
Cuidadores/educação , Cuidadores/psicologia , Instrução por Computador , Demência/enfermagem , Adaptação Psicológica , Humanos , Qualidade da Assistência à Saúde , Qualidade de Vida , Autoeficácia
13.
Alzheimers Dement (Amst) ; 8: 165-178, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28761927

RESUMO

INTRODUCTION: We conducted a meta-analysis of the conflicting epidemiologic evidence on the association between midlife body mass index (BMI) and dementia. METHODS: We searched standard databases to identify prospective, population-based studies of dementia risk by midlife underweight, overweight, and obesity. We performed random-effects meta-analyses and meta-regressions of adjusted relative risk (RR) estimates and formally explored between-study heterogeneity. RESULTS: We included 19 studies on 589,649 participants (2040 incident dementia cases) followed up for up to 42 years. Midlife (age 35 to 65 years) obesity (BMI ≥ 30) (RR, 1.33; 95% confidence interval [CI], 1.08-1.63), but not overweight (25 < BMI < 30) (RR, 1.07; 95% CI, 0.96-1.20), was associated with dementia in late life. The association with midlife underweight (RR, 1.39; 95% CI, 1.13-1.70) was potentially driven by residual confounding (P from meta-regression = .004), selection (P = .046), and information bias (P = .007). DISCUSSION: Obesity in midlife increases the risk of dementia. The association between underweight and dementia remains controversial.

14.
Sci Rep ; 7(1): 5697, 2017 07 18.
Artigo em Inglês | MEDLINE | ID: mdl-28720787

RESUMO

The well-established negative health outcomes of sleep deprivation, and the suggestion that availability of electricity may enable later bed times without compensating sleep extension in the morning, have stimulated interest in studying communities whose sleep pattern may resemble a pre-industrial state. Here, we describe sleep and activity in two neighbouring communities, one urban (Milange) and one rural (Tengua), in a region of Mozambique where urbanisation is an ongoing process. The two communities differ in the amount and timing of daily activity and of light exposure, with later bedtimes (≈1 h) associated with more evening and less daytime light exposure seen in the town of Milange. In contrast to previous reports comparing communities with and without electricity, sleep duration did not differ between Milange (7.28 h) and Tengua (7.23 h). Notably, calculated sleep quality was significantly poorer in rural Tengua than in Milange, and poor sleep quality was associated with a number of attributes more characteristic of rural areas, including more intense physical labour and less comfortable sleeping arrangements. Thus, whilst our data support the hypothesis that access to electricity delays sleep timing, the higher sleep quality in the urban population also suggests that some aspects of industrialisation are beneficial to sleep.


Assuntos
Iluminação , Sono/fisiologia , Urbanização , Vigília/fisiologia , Adolescente , Adulto , Ritmo Circadiano/fisiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Moçambique , Fatores de Tempo
15.
Chronobiol Int ; 34(2): 269-272, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28055282

RESUMO

Significant questions remain unanswered regarding the genetic versus environmental contributions to racial/ethnic differences in sleep and circadian rhythms. We addressed this question by investigating the association between diurnal preference, using the morningness-eveningness questionnaire (MEQ), and genetic ancestry within the Baependi Heart Study cohort, a highly admixed Brazilian population based in a rural town. Analysis was performed using measures of ancestry, using the Admixture program, and MEQ from 1,453 individuals. We found an association between the degree of Amerindian (but not European of African) ancestry and morningness, equating to 0.16 units for each additional percent of Amerindian ancestry, after adjustment for age, sex, education, and residential zone. To our knowledge, this is the first published report identifying an association between genetic ancestry and MEQ, and above all, the first one based on ancestral contributions within individuals living in the same community. This previously unknown ancestral dimension of diurnal preference suggests a stratification between racial/ethnic groups in an as yet unknown number of genetic polymorphisms.


Assuntos
Ritmo Circadiano , Indígenas Norte-Americanos/genética , Adulto , População Negra/genética , Brasil , Estudos de Coortes , Etnicidade , Feminino , Frequência do Gene , Homeostase , Humanos , Masculino , Pessoa de Meia-Idade , Polimorfismo Genético , População Rural , Sono , Inquéritos e Questionários , População Urbana , População Branca/genética
16.
Sleep Med Rev ; 33: 70-78, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-27908540

RESUMO

In recent years, strong evidence has emerged suggesting that insufficient duration, quality, and/or timing of sleep are associated with cardiovascular disease (CVD), and various mechanisms for this association have been proposed. Such associations may be related to endophenotypic features of the sleep homeostat and the circadian oscillator, or may be state-like effects of the environment. Here, we review recent literature on sleep, circadian rhythms and CVD with a specific emphasis on differences between racial/ethnic groups. We discuss the reported differences, mainly between individuals of European and African descent, in parameters related to sleep (architecture, duration, quality) and circadian rhythms (period length and phase shifting). We further review racial/ethnic differences in cardiovascular disease and its risk factors, and develop the hypothesis that racial/ethnic health disparities may, to a greater or smaller degree, relate to differences in parameters related to sleep and circadian rhythms. When humans left Africa some 100,000 years ago, some genetic differences between different races/ethnicities were acquired. These genetic differences have been proposed as a possible predictor of CVD disparities, but concomitant differences in culture and lifestyle between different groups may equally explain CVD disparities. We discuss the evidence for genetic and environmental causes of these differences in sleep and circadian rhythms, and their usefulness as health intervention targets.


Assuntos
Doenças Cardiovasculares/genética , Ritmo Circadiano/genética , Etnicidade/genética , Sono/genética , População Negra/genética , Doenças Cardiovasculares/etiologia , Ritmo Circadiano/fisiologia , Disparidades nos Níveis de Saúde , Humanos , Estilo de Vida , Grupos Raciais/genética , Fatores de Risco , Sono/fisiologia , População Branca/genética
17.
BMJ Open ; 6(10): e011598, 2016 10 21.
Artigo em Inglês | MEDLINE | ID: mdl-27797990

RESUMO

PURPOSE: Cardiovascular disease (CVD) is a major challenge to global health. The same epidemiological transition scenario is replayed as countries develop, but with variations based on environment, culture and ethnic mixture. The Baependi Heart Study was set up in 2005 to develop a longitudinal family-based cohort study that reflects on some of the genetic and lifestyle-related peculiarities of the Brazilian populations, in order to evaluate genetic and environmental influences on CVD risk factor traits. PARTICIPANTS: Probands were recruited in Baependi, a small rural town in the state of Minas Gerais, Brazil, following by first-degree and then increasingly more distant relatives. The first follow-up wave took place in 2010, and the second in 2016. At baseline, the study evaluated 1691 individuals across 95 families. Cross-sectional data have been collected for 2239 participants. FINDINGS TO DATE: Environmental and lifestyle factors and measures relevant to cardiovascular health have been reported. Having expanded beyond cardiovascular health outcomes, the phenotype datasets now include genetics, biochemistry, anthropometry, mental health, sleep and circadian rhythms. Many of these have yielded heritability estimates, and a shared genetic background of anxiety and depression has recently been published. In spite of universal access to electricity, the population has been found to be strongly shifted towards morningness compared with metropolitan areas. FUTURE PLANS: A new follow-up, marking 10 years of the study, is ongoing in 2016, in which data are collected as in 2010 (with the exception of the neuropsychiatric protocol). In addition to this, a novel questionnaire package collecting information about intelligence, personality and spirituality is being planned. The data set on circadian rhythms and sleep will be amended through additional questionnaires, actimetry, home sleep EEG recording and dim light melatonin onset (DLMO) analysis. Finally, the anthropometric measures will be expanded by adding three-dimensional facial photography, voice recording and anatomical brain MRI.


Assuntos
Doenças Cardiovasculares/etiologia , Conjuntos de Dados como Assunto , População Rural , Adulto , Antropometria , Brasil/epidemiologia , Doenças Cardiovasculares/etnologia , Doenças Cardiovasculares/genética , Doenças Cardiovasculares/psicologia , Ritmo Circadiano , Estudos de Coortes , Estudos Transversais , Etnicidade , Família , Feminino , Nível de Saúde , Humanos , Estilo de Vida , Masculino , Saúde Mental , Pessoa de Meia-Idade , Fenótipo , Fatores de Risco , Sono , Meio Social , Inquéritos e Questionários
18.
J Am Med Dir Assoc ; 17(4): 357-63, 2016 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-27016431

RESUMO

INTRODUCTION: Innovative Assistive Health Technology (AHT) has the potential to improve the quality of life for people with dementia or their families. Although development is in its preliminary stages, research shows first promising results. Despite such progress, we are still to observe widespread integration of technology into communities. If society is to benefit from innovative AHT to assist people with dementia and their caregivers, we must deepen our understanding of the needs, barriers, and enablers of innovative AHT. METHODS: In March 2015, multinational focus groups were undertaken to identify the barriers, enablers, stakeholder actions, and a future perspective for the use of AHT in dementia. This exploratory study was carried out in preparation of the first World Health Organization Ministerial Conference on the Global Action against Dementia. RESULTS: The focus group study identified that innovative AHT for people with dementia and caregivers is at an early stage of development; however, there is substantial promise across a range of different care needs. Focus group discussions identified internationally relevant barriers and enablers for the development of innovative AHT centring on an improved understanding for needs in dementia. CONCLUSION: There are many diverse barriers to the development of innovative AHT but none that appear insurmountable regarding the enablers that were mentioned. There is now an overriding imperative for a systematic, coordinated multistakeholder approach with the needs of people with dementia and their caregivers as the centerpiece.


Assuntos
Demência/fisiopatologia , Difusão de Inovações , Tecnologia Assistiva/tendências , Grupos Focais , Humanos , Internacionalidade
20.
PLoS Biol ; 13(10): e1002273, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26460723

RESUMO

The reliability of experimental findings depends on the rigour of experimental design. Here we show limited reporting of measures to reduce the risk of bias in a random sample of life sciences publications, significantly lower reporting of randomisation in work published in journals of high impact, and very limited reporting of measures to reduce the risk of bias in publications from leading United Kingdom institutions. Ascertainment of differences between institutions might serve both as a measure of research quality and as a tool for institutional efforts to improve research quality.


Assuntos
Disciplinas das Ciências Biológicas/métodos , Pesquisa Biomédica/métodos , Guias como Assunto , Publicações Periódicas como Assunto , Animais , Disciplinas das Ciências Biológicas/tendências , Pesquisa Biomédica/normas , Pesquisa Biomédica/tendências , Confiabilidade dos Dados , Humanos , Fator de Impacto de Revistas , Publicações Periódicas como Assunto/tendências , Viés de Publicação , Melhoria de Qualidade , Viés de Seleção , Reino Unido
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