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Given considerable variation in diagnostic and therapeutic practice, there is a need for national guidance on the use of neuroimaging, fluid biomarkers, cognitive testing, follow-up and diagnostic terminology in mild cognitive impairment (MCI). MCI is a heterogenous clinical syndrome reflecting a change in cognitive function and deficits on neuropsychological testing but relatively intact activities of daily living. MCI is a risk state for further cognitive and functional decline with 5-15% of people developing dementia per year. However, ~50% remain stable at 5 years and in a minority, symptoms resolve over time. There is considerable debate about whether MCI is a useful clinical diagnosis, or whether the use of the term prevents proper inquiry (by history, examination and investigations) into underlying causes of cognitive symptoms, which can include prodromal neurodegenerative disease, other physical or psychiatric illness, or combinations thereof. Cognitive testing, neuroimaging and fluid biomarkers can improve the sensitivity and specificity of aetiological diagnosis, with growing evidence that these may also help guide prognosis. Diagnostic criteria allow for a diagnosis of Alzheimer's disease to be made where MCI is accompanied by appropriate biomarker changes, but in practice, such biomarkers are not available in routine clinical practice in the UK. This would change if disease-modifying therapies became available and required a definitive diagnosis but would present major challenges to the National Health Service and similar health systems. Significantly increased investment would be required in training, infrastructure and provision of fluid biomarkers and neuroimaging. Statistical techniques combining markers may provide greater sensitivity and specificity than any single disease marker but their practical usefulness will depend on large-scale studies to ensure ecological validity and that multiple measures, e.g. both cognitive tests and biomarkers, are widely available for clinical use. To perform such large studies, we must increase research participation amongst those with MCI.
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Doença de Alzheimer , Disfunção Cognitiva , Doenças Neurodegenerativas , Atividades Cotidianas , Peptídeos beta-Amiloides , Biomarcadores , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/epidemiologia , Consenso , Progressão da Doença , Humanos , Testes Neuropsicológicos , Fragmentos de Peptídeos , Medicina EstatalRESUMO
While it is generally understood that Alzheimer's disease (AD) and related dementias (ADRD) is one of the costliest diseases to society, there is widespread concern that researchers and policymakers are not comprehensively capturing and describing the full scope and magnitude of the socioeconomic burden of ADRD. This review aimed to 1) catalogue the different types of AD-related socioeconomic costs described in the literature; 2) assess the challenges and gaps of existing approaches to measuring these costs; and 3) analyze and discuss the implications for stakeholders including policymakers, healthcare systems, associations, advocacy groups, clinicians, and researchers looking to improve the ability to generate reliable data that can guide evidence-based decision making. A centrally emergent theme from this review is that it is challenging to gauge the true value of policies, programs, or interventions in the ADRD arena given the long-term, progressive nature of the disease, its insidious socioeconomic impact beyond the patient and the formal healthcare system, and the complexities and current deficiencies (in measures and real-world data) in accurately calculating the full costs to society. There is therefore an urgent need for all stakeholders to establish a common understanding of the challenges in evaluating the full cost of ADRD and define approaches that allow us to measure these costs more accurately, with a view to prioritizing evidence-based solutions to mitigate this looming public health crisis.
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Doença de Alzheimer/economia , Efeitos Psicossociais da Doença , Saúde Global/economia , Custos de Cuidados de Saúde , Fatores Socioeconômicos , Participação dos Interessados , Doença de Alzheimer/epidemiologia , Doença de Alzheimer/psicologia , Demência/economia , Demência/epidemiologia , Demência/psicologia , Saúde Global/tendências , Custos de Cuidados de Saúde/tendências , Humanos , Participação dos Interessados/psicologiaRESUMO
INTRODUCTION: Current pharmacological interventions for Alzheimer's dementia delay symptom progression for about a year. Although the outcomes in earlier disease states may include changes in biomarkers, the clinical effectiveness of any intervention can ultimately only be assessed by a patient's self-reported well-being. A better understanding of earlier manifestations of Alzheimer's disease and the drive for relevant outcome measures, allied to technological advances in artificial intelligence, have mediated the electronic Person-Specific Outcome Measure (ePSOM) development program. METHODS: There are 4 sequential stages in the ePSOM development program-(1) literature review, (2) focus group study, (3) national survey, and (4) development of an app for capturing person-specific outcomes. Here, we report the overall approach to the program incorporating our literature review on patient-reported outcome measures and patient preferences in the Alzheimer's disease population. RESULTS: Alzheimer's disease trials do not use any patient-reported outcome measures. Quality of life measures are often used as proxies for this, but they do not capture individual needs. Therefore, trials currently fail to reflect the participant's aspirations for effect but rather default to clinicostatistical measure of cognition and function. There is no implementation of patient preferences despite evidence that understanding preferences may influence adherence to treatment. DISCUSSION: It is important to consider preferences for an intervention and use PROMs for the measure of effectiveness given that both risk and benefit are judged by the recipient of the treatment. The ePSOM development program will deliver the methodology for incorporating meaningful outcomes in clinical trials to expand upon current biological and clinical measurements of effectiveness.
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BACKGROUND: Accession of 10 Central and Eastern European (CEE) countries to the E.U. resulted in the largest migratory influx in peacetime British history. No information exists on the sexual behaviour of CEE migrants within the U.K. The aim of this study was to assess the sexual lifestyles and health service needs of these communities. METHODS: A survey, delivered electronically and available in 12 languages, of migrants from the 10 CEE accession countries recruited from community venues in London following extensive social mapping and via the Internet. Reported behaviours were compared with those from national probability survey data. RESULTS: 2648 CEE migrants completed the survey. Male CEE migrants reported higher rates of partner acquisition (adjusted OR (aOR) 2.1, 95% CI: 1.3 to 2.1) and paying for sex (aOR 3.2, 95% CI: 2.5 to 4.0), and both male and female CEE migrants reported more injecting drug use (men: aOR 2.2, 95% CI: 1.3 to 3.9; women: aOR 3.0, 95% CI 1.1 to 8.1), than the general population; however, CEE migrants were more likely to report more consistent condom use and lower reported diagnoses of sexually transmitted infections (STI). Just over 1% of respondents reported being HIV positive. Most men and a third of women were not registered for primary care in the U.K. DISCUSSION: CEE migrants to London report high rates of behaviours associated with increased risk of HIV/STI acquisition and transmission. These results should inform service planning, identify where STI and HIV interventions should be targeted, and provide baseline data to help evaluate the effectiveness of such interventions.
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Infecções por HIV/psicologia , Comportamento Sexual/etnologia , Parceiros Sexuais , Migrantes/psicologia , Adolescente , Adulto , Distribuição por Idade , Idoso , Europa Oriental/etnologia , Feminino , Infecções por HIV/etnologia , Humanos , Londres/epidemiologia , Masculino , Pessoa de Meia-Idade , Características de Residência , Fatores de Risco , Assunção de Riscos , Distribuição por Sexo , Infecções Sexualmente Transmissíveis/etnologia , Infecções Sexualmente Transmissíveis/psicologia , Transtornos Relacionados ao Uso de Substâncias/etnologia , Transtornos Relacionados ao Uso de Substâncias/psicologia , Migrantes/estatística & dados numéricos , Sexo sem Proteção , Adulto JovemRESUMO
BACKGROUND: Following the expansion of the European Union, there has been a large influx of Central and East European (CEE) migrants to the UK. CEE men who have sex with men (MSM) represent a small minority within this population that are none-the-less important to capture in sexual health research among the CEE migrant community. This paper examines the feasibility of recruiting CEE MSM for a survey of sexual behaviour in London using respondent driven sampling (RDS), via gay websites and in GUM clinics. METHODS: We sought CEE MSM to start RDS chain referral among GUM clinic attendees, our personal contacts and at gay events and venues in central London. We recruited CEE MSM (n = 485) via two popular websites for gay men in Britain (March-May 2009) and at two central London GUM clinics (n = 51) (July 2008-March 2009). RESULTS: We found seventeen men who knew other CEE MSM in London and agreed to recruit contacts into the study. These men recruited only three men into the study, none of whom recruited any further respondents, and RDS was abandoned after 7 months (July 2008-January 2009). Half of the men that we approached to participate in RDS did not know any other CEE MSM in London. Men who agreed to recruit contacts for RDS were rather more likely to have been in the UK for more than one year (94.1% vs 70.0%, p = 0.052). Men recruited through gay websites and from GUM clinics were similar. CONCLUSIONS: The Internet was the most successful method for collecting data on sexual risk behaviour among CEE MSM in London. CEE MSM in London were not well networked. RDS may also have failed because they did not fully understand the procedure and/or the financial incentive was not sufficient motivation to take part.
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Coleta de Dados/métodos , Emigrantes e Imigrantes , Saúde do Homem/etnologia , Comportamento Sexual/etnologia , Parceiros Sexuais , Homossexualidade Masculina , Humanos , Internet , Londres/epidemiologia , Masculino , Recusa de Participação , Risco , Assunção de Riscos , AutorrelatoRESUMO
OBJECTIVES: There has been a large influx of central and east European (CEE) migrants to the U.K. following the expansion of the European Union. This paper examines factors associated with genitourinary medicine (GUM) clinic attendance and sexually transmitted infection (STI) diagnosis among CEE migrants in London. METHODS: A survey of sexual behaviour was conducted among CEE migrants attending two central London GUM clinics (n=299) and community venues in London (n=2276). Routinely collected clinic data were also analysed. RESULTS: CEE migrants made up 2.9% of male and 7.0% of female attendees at the clinics. Half the women attending sessions for female sex workers were from CEE countries, and paying for sex was widely reported by men. Women were more likely than men to have attended a GUM clinic in the U.K. (7.6% vs. 4.5%, p=0.002). GUM survey respondents were more likely than community survey respondents to report one or more new sexual partners in the past year (women 67.9% vs. 28.3%, p < 0.001; men 75.6% vs. 45.1%, p < 0.001) and homosexual partnership(s) in the past 5 years (men 54.3% vs. 1.8%, p < 0.001), but were less likely to report assortative heterosexual mixing (women 25.9% vs. 74.2%, p < 0.001; men 56.5% vs. 76.3%, p < 0.001). CONCLUSIONS: CEE patients make up a notable minority of patients attending two central London GUM clinics. Higher numbers of sexual partners, homosexual partnerships and sexual mixing with people from outside the country of origin are associated with GUM clinic attendance. Heterosexual CEE men report behaviours associated with HIV/STI acquisition but appear to be underutilising GUM services.
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Assistência Ambulatorial/estatística & dados numéricos , Comportamento Sexual/estatística & dados numéricos , Infecções Sexualmente Transmissíveis/etnologia , Migrantes/estatística & dados numéricos , Venereologia/estatística & dados numéricos , Adolescente , Adulto , Idoso , Preservativos/estatística & dados numéricos , Estudos Transversais , Europa Oriental/etnologia , Feminino , Infecções por HIV/diagnóstico , Infecções por HIV/etnologia , Humanos , Londres/epidemiologia , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Parceiros Sexuais , Infecções Sexualmente Transmissíveis/diagnóstico , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Since May 2004, 10 central and east European (CEE) countries have joined the European Union. While HIV rates remain low among men who have sex with men (MSM) in CEE countries, there is no research on the sexual behaviour of CEE MSM in the U.K. METHODS: CEE MSM living in the U.K. (n=691) were recruited for an online questionnaire by two popular MSM websites. RESULTS: The majority of men had arrived in the U.K. since May 2004. A previous sexually transmitted infection (STI) diagnosis was reported by 30.7%, and 4.8% reported being HIV positive, the majority diagnosed in the U.K. Unprotected anal intercourse with a casual partner of unknown or discordant HIV status was reported by 22.8%. Men who had been in the U.K. for longer (>5 years vs. <1 year) reported more partners in the past 5 years (67.2% vs. 50.4% had >10 partners, p < 0.001) and were less likely to report their most recent partner was from their home country (14.9% vs. 33.6%, p < 0.001). Among migrant CEE MSM living in London, 15.4% had been paid for sex in the U.K. and 41.5% had taken recreational drugs in the past year. CONCLUSION: CEE MSM in the U.K. are at risk for the acquisition and transmission of STI and HIV through unprotected anal intercourse with non-concordant casual partners. Sexual mixing with men from other countries, commercial sex and increased partner numbers may introduce additional risk. This has important implications for the cross-border transmission of infections between the U.K. and CEE countries.
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Homossexualidade Masculina/psicologia , Parceiros Sexuais , Migrantes/psicologia , Sexo sem Proteção/fisiologia , Adolescente , Adulto , Idoso , Assistência Ambulatorial/estatística & dados numéricos , Europa Oriental/etnologia , Infecções por HIV/epidemiologia , Homossexualidade Masculina/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Infecções Sexualmente Transmissíveis/epidemiologia , Migrantes/estatística & dados numéricos , Reino Unido/epidemiologia , Sexo sem Proteção/estatística & dados numéricos , Venereologia/estatística & dados numéricos , Adulto JovemRESUMO
BACKGROUND: Since May 2004, ten Central and Eastern European (CEE) countries have joined the European Union, leading to a large influx of CEE migrants to the United Kingdom (UK). The SALLEE project (sexual attitudes and lifestyles of London's Eastern Europeans) set out to establish an understanding of the sexual lifestyles and reproductive health risks of CEE migrants. CEE nationals make up a small minority of the population resident in the UK with no sampling frame from which to select a probability sample. There is also difficulty estimating the socio-demographic and geographical distribution of the population. In addition, measuring self-reported sexual behaviour which is generally found to be problematic, may be compounded among people from a range of different cultural and linguistic backgrounds. This paper will describe the methods adopted by the SALLEE project to address these challenges. METHODS: The research was undertaken using quantitative and qualitative methods: a cross-sectional survey of CEE migrants based on three convenience samples (recruited from community venues, sexual health clinics and from the Internet) and semi-structured in-depth interviews with a purposively selected sample of CEE migrants. A detailed social mapping exercise of the CEE community was conducted prior to commencement of the survey to identify places where CEE migrants could be recruited. A total of 3,005 respondents took part in the cross-sectional survey, including 2,276 respondents in the community sample, 357 in the clinic sample and 372 in the Internet sample. 40 in-depth qualitative interviews were undertaken with a range of individuals, as determined by the interview quota matrix. DISCUSSION: The SALLEE project has benefited from using quantitative research to provide generalisable data on a range of variables and qualitative research to add in-depth understanding and interpretation. The social mapping exercise successfully located a large number of CEE migrants for the community sample and is recommended for other migrant populations, especially when little or no official data are available for this purpose. The project has collected timely data that will help us to understand the sexual lifestyles, reproductive health risks and health service needs of CEE communities in the UK.