Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 31
Filtrar
Mais filtros

Bases de dados
Tipo de documento
País de afiliação
Intervalo de ano de publicação
1.
Artigo em Inglês | MEDLINE | ID: mdl-38381324

RESUMO

Mental and financial hardship during the COVID-19 pandemic in New York City was severe, but how vulnerable groups have been disproportionately impacted is incompletely understood. In partnership with community stakeholders, we administered a web-based survey to a convenience sample of New York City residents (18 + years) from May 2020 to April 2021 to evaluate their financial and emotional stressors. We analyzed outcomes by race, ethnicity, and education level. A total of 1854 adults completed the survey across three consecutive non-overlapping samples. Fifty-five percent identified other than non-Latinx White. Sixty-four percent reported emotional stress; 38%, 32%, and 32% reported symptoms of anxiety, depression, and post-traumatic stress disorder respectively; and 21% reported a large adverse financial impact. The leading unmet needs were mental health and food services (both 19%), and health services (18%). Need for both resources grew over time. Adverse financial impact directly correlated with presence of all four adverse mental health outcomes above. In multivariate analysis, non-White race and lack of college degree were associated with adverse financial impact, whereas LGBT identity and lack of college degree were associated with mental health impact. Throughout the COVID-19 pandemic, participants in this research demonstrated a large and growing mental and financial strain, disproportionately associated with lower education level, non-White race, and LGBT status. Our findings suggest an urgent need to differentially target COVID-19 mental health and resource support in New York City to persons in these vulnerable communities.

2.
Genet Med ; 26(1): 101011, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37897232

RESUMO

PURPOSE: To better understand the effects of returning diagnostic sequencing results on clinical actions and economic outcomes for pediatric patients with suspected genetic disorders. METHODS: Longitudinal physician claims data after diagnostic sequencing were obtained for patients aged 0 to 21 years with neurologic, cardiac, and immunologic disorders with suspected genetic etiology. We assessed specialist consultation rates prompted by primary diagnostic results, as well as marginal effects on overall 18-month physician services and costs. RESULTS: We included data on 857 patients (median age: 9.6 years) with a median follow-up of 17.3 months after disclosure of diagnostic sequencing results. The likelihood of having ≥1 recommendation for specialist consultation in 155 patients with positive findings was high (72%) vs 23% in 443 patients with uncertain findings and 21% in 259 patients with negative findings (P < .001). Follow-through consultation occurred in 30%. Increases in 18-month physician services and costs following a positive finding diminished after multivariable adjustment. Also, no significant differences between those with uncertain and negative findings were demonstrated. CONCLUSION: Our study did not provide evidence for significant increases in downstream physician services and costs after returning positive or uncertain diagnostic sequencing findings. More large-scale longitudinal studies are needed to confirm these findings.


Assuntos
Revelação , Médicos , Humanos , Criança , Custos e Análise de Custo
3.
Popul Health Manag ; 26(5): 309-316, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37643304

RESUMO

Community-based organizations (CBOs) are on the frontlines offering resources and support to residents during times of distress. Through a community-academic partnership, an interdisciplinary team developed, collected, and analyzed 91 surveys from social services providers across New York City assessing the impact of the COVID-19 pandemic on their organizations' operations. The majority (93%) of these organizations stayed open during the pandemic but had to shift the services they offered to meet new needs. Although most (89%) shared they were not offering on-site testing for COVID-19, 53% expressed interest in becoming a test site, citing needs such as funding, test kits, and skills-building for staff. More than half of the respondents were eager to get involved in public health efforts in other ways, such as joining local research advisory boards. Despite increasing the services they provided, CBOs saw decreases in staffing and volunteers. Furthermore, although nearly half (48%) received governmental aid, many faced financial pressures and several had to close offices during the pandemic. As trusted resources, CBOs can help meet public health needs if provided with proper support and resources. It is critical that those working in prevention and relief are considerate about how and when they leverage effective partnerships between public health organizations and CBOs, offering organizations the resources they need to be effective in this charge, given the role they can have in promoting health equity.


Assuntos
COVID-19 , Humanos , Saúde Pública , Pandemias , Cidade de Nova Iorque , Teste para COVID-19
4.
Medicine (Baltimore) ; 100(45): e27785, 2021 Nov 12.
Artigo em Inglês | MEDLINE | ID: mdl-34766590

RESUMO

ABSTRACT: While increased obesity prevalence among persons of African ancestry (AAs) compared to persons of European ancestry (EAs) is linked to social, environmental and behavioral factors, there are no gene variants that are common and significantly associated with obesity in AA populations. We sought to explore the association between ancestry specific renal risk variants in the apolipoprotein L1 (APOL1) gene with obesity related traits in AAs.We conducted a genotype-phenotype association study from 3 electronic medical record linked cohorts (BioMe Biobank, BioVU, nuGENE); randomized controlled trials (genetic testing to understand and address renal disease disparities) and prospective cohort study (Jackson Heart Study). We analyzed association of APOL1 renal risk variants with cross-sectional measures of obesity (average body mass index (BMI), and proportion of overweight and obesity) and with measures of body composition (in Jackson Heart Study).We had data on 11,930 self-reported AA adults. Across cohorts, mean age was from 42 to 49 years and percentage female from 58% to 75.3%. Individuals who have 2 APOL1 risk alleles (14% of AAs) have 30% higher obesity odds compared to others (recessive model adjusted odds ratio 1.30; 95% confidence interval 1.16-1.41; P = 2.75 × 10-6). An additive model better fit the association, in which each allele (47% of AAs) increases obesity odds by 1.13-fold (adjusted odds ratio 1.13; 95% confidence interval 1.07-1.19; P = 3.07 × 10-6) and increases BMI by 0.36 kg/m2 (∼1 kg, for 1.7 m height; P = 2 × 10-4). APOL1 alleles are not associated with refined body composition traits overall but are significantly associated with fat free mass index in women [0.30 kg/m2 increment per allele; P = .03].Thus, renal risk variants in the APOL1 gene, found in nearly half of AAs, are associated with BMI and obesity in an additive manner. These variants could, either on their own or interacting with environmental factors, explain a proportion of ethnic disparities in obesity.


Assuntos
Apolipoproteína L1 , Negro ou Afro-Americano , Adulto , Negro ou Afro-Americano/genética , Apolipoproteína L1/genética , Apolipoproteínas/genética , Composição Corporal/genética , Estudos Transversais , Feminino , Estudos de Associação Genética , Predisposição Genética para Doença , Genótipo , Humanos , Pessoa de Meia-Idade , Obesidade/epidemiologia , Obesidade/genética , Estudos Prospectivos , Fatores de Risco
5.
PLoS One ; 16(6): e0248496, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34097700

RESUMO

BACKGROUND: Non-communicable diseases (NCDs) are the leading cause of mortality in the world, and innovative approaches to NCD care delivery are being actively developed and evaluated. Combining the group-based experience of microfinance and group medical visits is a novel approach to NCD care delivery. However, the contextual factors, facilitators, and barriers impacting wide-scale implementation of these approaches within a low- and middle-income country setting are not well known. METHODS: Two types of qualitative group discussion were conducted: 1) mabaraza (singular, baraza), a traditional East African community gathering used to discuss and exchange information in large group settings; and 2) focus group discussions (FGDs) among rural clinicians, community health workers, microfinance group members, and patients with NCDs. Trained research staff members led the discussions using structured question guides. Content analysis was performed with NVivo using deductive and inductive codes that were then grouped into themes. RESULTS: We conducted 5 mabaraza and 16 FGDs. A total of 205 individuals (113 men and 92 women) participated in the mabaraza, while 162 individuals (57 men and 105 women) participated in the FGDs. In the context of poverty and previous experiences with the health system, participants described challenges to NCD care across three themes: 1) stigma of chronic disease, 2) earned skepticism of the health system, and 3) socio-economic fragility. However, they also outlined windows of opportunity and facilitators of group medical visits and microfinance to address those challenges. DISCUSSION: Our qualitative study revealed actionable factors that could impact the success of implementation of group medical visits and microfinance initiatives for NCD care. While several challenges were highlighted, participants also described opportunities to address and mitigate the impact of these factors. We anticipate that our approach and analysis provides new insights and methodological techniques that will be relevant to other low-resource settings worldwide.


Assuntos
Atitude Frente a Saúde/etnologia , Doença Crônica/psicologia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Doença Crônica/epidemiologia , Agentes Comunitários de Saúde/psicologia , Atenção à Saúde/tendências , Feminino , Grupos Focais , Programas Governamentais/tendências , Acessibilidade aos Serviços de Saúde/tendências , Humanos , Quênia , Masculino , Assistência Médica , Doenças não Transmissíveis/epidemiologia , Doenças não Transmissíveis/prevenção & controle , Pesquisa Qualitativa , População Rural/tendências , Estigma Social , Participação dos Interessados/psicologia
7.
Med Care ; 58 Suppl 6 Suppl 1: S60-S65, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32412954

RESUMO

BACKGROUND: New York State Medicaid's Health Home program is an example of a natural experiment that could affect individuals with diabetes. While evaluations of interventions such as the Health Home program are generally based solely on clinical and administrative data and rarely examine patients' experience, patients may add to the understanding of the intervention's implementation and mechanisms of impact. OBJECTIVE: The objective of this study was to qualitatively examine the health and nonmedical challenges faced by Medicaid-insured patients with diabetes and their experiences with the services provided by New York's Health Homes to address these challenges. RESEARCH DESIGN: We performed 10 focus groups and 23 individual interviews using a guide developed in collaboration with a stakeholder board. We performed a thematic analysis to identify cross-cutting themes. SUBJECTS: A total of 63 Medicaid-insured individuals with diabetes, 31 of whom were enrolled in New York's Health Home program. RESULTS: While participants were not generally familiar with the term "Health Home," they described and appreciated services consistent with Health Home enrollment delivered by care managers. Services addressed challenges in access to care, especially by facilitating and reminding participants about appointments, and nonmedical needs, such as transportation, housing, and help at home. Participants valued their personal relationships with care managers and the psychosocial support they provided. CONCLUSIONS: From the perspective of its enrollees, the Health Home program primarily addressed access to care, but also addressed material and psychosocial needs. These findings have implications for Health Home entities and for research assessing their impact.


Assuntos
Diabetes Mellitus/terapia , Medicaid/organização & administração , Satisfação do Paciente , Assistência Centrada no Paciente/organização & administração , Adulto , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , New York , Estados Unidos
8.
JAMA Netw Open ; 2(12): e1916545, 2019 12 02.
Artigo em Inglês | MEDLINE | ID: mdl-31790570

RESUMO

Importance: Cardiovascular disease, cancer, and other noncommunicable diseases (NCDs) are the leading causes of mortality in low- and middle-income countries. Previous studies show that nonphysician health workers (NPHWs), including nurses and volunteers, can provide effective diagnosis and treatment of NCDs. However, the factors that facilitate and impair these programs are incompletely understood. Objective: To identify health system barriers to and facilitators of NPHW-led care for NCDs in low- and middle-income countries. Data Sources: All systematic reviews in PubMed published by May 1, 2018. Study Selection: The search terms used for this analysis included "task shifting" and "non-physician clinician." Only reviews of NPHW care that occurred entirely or mostly in low- and middle-income countries and focused entirely or mostly on NCDs were included. All studies cited within each systematic review that cited health system barriers to and facilitators of NPHW care were reviewed. Data Extraction and Synthesis: Assessment of study eligibility was performed by 1 reviewer and rechecked by another. The 2 reviewers extracted all data. Reviews were performed from November 2017 to July 2018. All analyses were descriptive. Main Outcomes and Measures: All barriers and facilitators mentioned in all studies were tallied and sorted according to the World Health Organization's 6 building blocks for health systems. Results: This systematic review and qualitative analysis identified 15 review articles, which cited 156 studies, of which 71 referenced barriers to and facilitators of care. The results suggest 6 key lessons: (1) select qualified NPHWs embedded within the community they serve; (2) provide detailed, ongoing training and supervision; (3) authorize NPHWs to prescribe medication and render autonomous care; (4) equip NPHWs with reliable systems to track patient data; (5) furnish NPHWs consistently with medications and supplies; and (6) compensate NPHWs adequately commensurate with their roles. Conclusions and Relevance: Although the health system barriers to NPHW screening, treatment, and control of NCDs and their risk factors are numerous and complex, a diverse set of care models has demonstrated strategies to address nearly all of these challenges. These facilitating approaches-which relate chiefly to strong, consistent NPHW training, guidance, and logistical support-generate a blueprint for the creation and scale-up of such programs adaptable across multiple chronic diseases, including in high-income countries.


Assuntos
Atenção à Saúde/estatística & dados numéricos , Países em Desenvolvimento/estatística & dados numéricos , Pessoal de Saúde/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Doenças não Transmissíveis/enfermagem , Humanos
9.
Health Educ Behav ; 46(6): 1073-1082, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31441328

RESUMO

There is a need for diabetes prevention efforts targeting vulnerable populations. Our community-academic partnership, the East Harlem Partnership for Diabetes Prevention, conducted a randomized controlled trial to study the impact of peer led diabetes prevention workshops on weight and diabetes risk among an economically and racially diverse population in East Harlem, New York. We recruited overweight/obese adults from more than 50 community sites and conducted oral glucose tolerance testing and completed other clinical assessments and a health and lifestyle survey. We randomized prediabetic participants to intervention or delayed intervention groups. Intervention participants attended eight 90-minute peer-led workshop sessions at community sites. Participants in both groups returned for follow-up assessments 6 months after randomization. The main outcomes were the proportion of participants who achieved 5% weight loss, percentage weight loss, and change in the probability of developing diabetes over the next 7.5 years according to the San Antonio Diabetes Prediction Model. We enrolled 402 participants who were mainly female (85%), Latino (73%) or Black (23%), foreign born (64%), and non-English speaking (58%). At 6 months, the intervention group lost a greater percentage of their baseline weight, had significantly lower rise in HbA1c (glycated hemoglobin), decreased risk of diabetes, larger decreases in fat and fiber intake, improved confidence in nutrition label reading, and decrease in sedentary behavior as compared with the control group. Thus, in partnership with community stakeholders, we created an effective low-resource program that was less intensive than previously studied programs by incorporating strategies to engage and affect our priority population.


Assuntos
Diabetes Mellitus Tipo 2/prevenção & controle , Educação em Saúde/métodos , Redução de Peso , Adulto , Pesquisa Participativa Baseada na Comunidade , Diabetes Mellitus Tipo 2/etnologia , Feminino , Teste de Tolerância a Glucose , Disparidades nos Níveis de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Cidade de Nova Iorque , Grupo Associado , Áreas de Pobreza , Avaliação de Programas e Projetos de Saúde
10.
Genet Med ; 21(10): 2364-2370, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-30948857

RESUMO

PURPOSE: African ancestry (AA) individuals are inadequately included in translational genomics research, limiting generalizability of findings and benefits of genomic discoveries for populations already facing disproportionately poor health outcomes. We aimed to determine the impact of stakeholder-engaged strategies on recruitment and retention of AA adult patients into a clinical trial testing them for renal risk variants nearly exclusive to AAs. METHODS: Our academic-clinical-community team developed ten key strategies that recognize AAs' barriers and facilitators for participation. Using electronic health records (EHRs), we identified potentially eligible patients. Recruiters reached out through letters, phone calls, and at medical visits. RESULTS: Of 5481 AA patients reached, 51% were ineligible, 37% enrolled, 4% declined, 7% were undecided when enrollment finished. We retained 93% at 3-month and 88% at 12-month follow-up. Those enrolled are more likely female, seen at community sites, and reached through active strategies, than those who declined. Those retained are more likely female, health-literate, and older. While many patients have low income, low clinician trust, and perceive racism in health care, none of these attributes correlate with retention. CONCLUSION: With robust stakeholder engagement, recruiters from patients' communities, and active approaches, we successfully recruited and retained AA patients into a genomic clinical trial.


Assuntos
Negro ou Afro-Americano/psicologia , Ensaios Clínicos como Assunto/métodos , Seleção de Pacientes/ética , Adulto , Feminino , Genômica/ética , Genômica/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Participação dos Interessados/psicologia
11.
J Am Med Inform Assoc ; 26(3): 219-227, 2019 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-30590688

RESUMO

Objective: We describe a stratified sampling design that combines electronic health records (EHRs) and United States Census (USC) data to construct the sampling frame and an algorithm to enrich the sample with individuals belonging to rarer strata. Materials and Methods: This design was developed for a multi-site survey that sought to examine patient concerns about and barriers to participating in research studies, especially among under-studied populations (eg, minorities, low educational attainment). We defined sampling strata by cross-tabulating several socio-demographic variables obtained from EHR and augmented with census-block-level USC data. We oversampled rarer and historically underrepresented subpopulations. Results: The sampling strategy, which included USC-supplemented EHR data, led to a far more diverse sample than would have been expected under random sampling (eg, 3-, 8-, 7-, and 12-fold increase in African Americans, Asians, Hispanics and those with less than a high school degree, respectively). We observed that our EHR data tended to misclassify minority races more often than majority races, and that non-majority races, Latino ethnicity, younger adult age, lower education, and urban/suburban living were each associated with lower response rates to the mailed surveys. Discussion: We observed substantial enrichment from rarer subpopulations. The magnitude of the enrichment depends on the accuracy of the variables that define the sampling strata and the overall response rate. Conclusion: EHR and USC data may be used to define sampling strata that in turn may be used to enrich the final study sample. This design may be of particular interest for studies of rarer and understudied populations.


Assuntos
Censos , Registros Eletrônicos de Saúde , Seleção de Pacientes , Inquéritos e Questionários , Adulto , Idoso , Algoritmos , Etnicidade , Feminino , Humanos , Masculino , Uso Significativo , Pessoa de Meia-Idade , Grupos Minoritários , Grupos Raciais , Estados Unidos
12.
Am J Hum Genet ; 103(3): 319-327, 2018 09 06.
Artigo em Inglês | MEDLINE | ID: mdl-30193136

RESUMO

The Clinical Sequencing Evidence-Generating Research (CSER) consortium, now in its second funding cycle, is investigating the effectiveness of integrating genomic (exome or genome) sequencing into the clinical care of diverse and medically underserved individuals in a variety of healthcare settings and disease states. The consortium comprises a coordinating center, six funded extramural clinical projects, and an ongoing National Human Genome Research Institute (NHGRI) intramural project. Collectively, these projects aim to enroll and sequence over 6,100 participants in four years. At least 60% of participants will be of non-European ancestry or from underserved settings, with the goal of diversifying the populations that are providing an evidence base for genomic medicine. Five of the six clinical projects are enrolling pediatric patients with various phenotypes. One of these five projects is also enrolling couples whose fetus has a structural anomaly, and the sixth project is enrolling adults at risk for hereditary cancer. The ongoing NHGRI intramural project has enrolled primarily healthy adults. Goals of the consortium include assessing the clinical utility of genomic sequencing, exploring medical follow up and cascade testing of relatives, and evaluating patient-provider-laboratory level interactions that influence the use of this technology. The findings from the CSER consortium will offer patients, healthcare systems, and policymakers a clearer understanding of the opportunities and challenges of providing genomic medicine in diverse populations and settings, and contribute evidence toward developing best practices for the delivery of clinically useful and cost-effective genomic sequencing in diverse healthcare settings.


Assuntos
Genoma Humano/genética , Adulto , Análise Custo-Benefício/métodos , Atenção à Saúde/métodos , Europa (Continente) , Exoma/genética , Genômica/métodos , Humanos , National Human Genome Research Institute (U.S.) , Fenótipo , Estados Unidos , Sequenciamento Completo do Genoma/métodos
13.
Am Heart J ; 188: 175-185, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28577673

RESUMO

BACKGROUND: Cardiovascular disease (CVD) is the leading cause of mortality worldwide, with >80% of CVD deaths occurring in low and middle income countries (LMICs). Diabetes mellitus and pre-diabetes are risk factors for CVD, and CVD is the major cause of morbidity and mortality among individuals with DM. There is a critical period now during which reducing CVD risk among individuals with diabetes and pre-diabetes may have a major impact. Cost-effective, culturally appropriate, and context-specific approaches are required. Two promising strategies to improve health outcomes are group medical visits and microfinance. METHODS/DESIGN: This study tests whether group medical visits integrated into microfinance groups are effective and cost-effective in reducing CVD risk among individuals with diabetes or at increased risk for diabetes in western Kenya. An initial phase of qualitative inquiry will assess contextual factors, facilitators, and barriers that may impact integration of group medical visits and microfinance for CVD risk reduction. Subsequently, we will conduct a four-arm cluster randomized trial comparing: (1) usual clinical care, (2) usual clinical care plus microfinance groups only, (3) group medical visits only, and (4) group medical visits integrated into microfinance groups. The primary outcome measure will be 1-year change in systolic blood pressure, and a key secondary outcome measure is 1-year change in overall CVD risk as measured by the QRISK2 score. We will conduct mediation analysis to evaluate the influence of changes in social network characteristics on intervention outcomes, as well as moderation analysis to evaluate the influence of baseline social network characteristics on effectiveness of the interventions. Cost-effectiveness analysis will be conducted in terms of cost per unit change in systolic blood pressure, percent change in CVD risk score, and per disability-adjusted life year saved. DISCUSSION: This study will provide evidence regarding effectiveness and cost-effectiveness of interventions to reduce CVD risk. We aim to produce generalizable methods and results that can provide a model for adoption in low-resource settings worldwide.


Assuntos
Doenças Cardiovasculares/prevenção & controle , Países em Desenvolvimento , Diabetes Mellitus/terapia , Promoção da Saúde/métodos , Renda , Prevenção Primária/métodos , Comportamento de Redução do Risco , Adulto , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/etiologia , Análise Custo-Benefício , Diabetes Mellitus/epidemiologia , Feminino , Seguimentos , Humanos , Incidência , Quênia/epidemiologia , Masculino , Estudos Retrospectivos , Fatores de Risco , Adulto Jovem
14.
Artigo em Inglês | MEDLINE | ID: mdl-28241508

RESUMO

Development and implementation of effective, sustainable, and scalable interventions that advance equity could be propelled by innovative and inclusive partnerships. Readied catalytic frameworks that foster communication, collaboration, a shared vision, and transformative translational research across scientific and non-scientific divides are needed to foster rapid generation of novel solutions to address and ultimately eliminate disparities. To achieve this, we transformed and expanded a community-academic board into a translational science board with members from public, academic and private sectors. Rooted in team science, diverse board experts formed topic-specific "accelerators", tasked with collaborating to rapidly generate new ideas, questions, approaches, and projects comprising patients, advocates, clinicians, researchers, funders, public health and industry leaders. We began with four accelerators-digital health, big data, genomics and environmental health-and were rapidly able to respond to funding opportunities, transform new ideas into clinical and community programs, generate new, accessible, actionable data, and more efficiently and effectively conduct research. This innovative model has the power to maximize research quality and efficiency, improve patient care and engagement, optimize data democratization and dissemination among target populations, contribute to policy, and lead to systems changes needed to address the root causes of disparities.


Assuntos
Pesquisa Biomédica/organização & administração , Disseminação de Informação/métodos , Pesquisadores/psicologia , Pesquisa Translacional Biomédica/métodos , Comunicação , Comportamento Cooperativo , Guias como Assunto , Humanos , Relações Interprofissionais , Modelos Organizacionais , Objetivos Organizacionais , Estados Unidos
15.
Am J Hum Genet ; 100(3): 414-427, 2017 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-28190457

RESUMO

Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%-69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%-87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%-55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants' concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research.


Assuntos
Bancos de Espécimes Biológicos/ética , Disseminação de Informação/ética , Consentimento Livre e Esclarecido/ética , Opinião Pública , Adolescente , Adulto , Idoso , Pesquisa Biomédica/ética , Registros Eletrônicos de Saúde/ética , Feminino , Genoma Humano , Genômica , Humanos , Masculino , Pessoa de Meia-Idade , Privacidade , Fatores Socioeconômicos , Estados Unidos , Adulto Jovem
16.
Stroke ; 47(2): 512-5, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26628384

RESUMO

BACKGROUND AND PURPOSE: Although poststroke depression is common, racial-ethnic disparities in depression among stroke survivors remain underexplored. Thus, we investigated the relationship between race/ethnicity and depression in a multiracial-ethnic stroke cohort. METHODS: Baseline survey data of validated scales of depression and functional status, demographics, comorbidities, and socioeconomic status were used from a recurrent stroke prevention study among community-dwelling urban stroke/transient ischemic attack survivors. RESULTS: The cohort included 556 participants with a mean age of 64 years. The majorities were black (44%) or latino (42%) and female (60%), had their last stroke/transient ischemic attack nearly 2 years before study enrollment, and lived below the poverty level (58%). Nearly 1 in 2 latinos, 1 in 4 blacks, and 1 in 8 whites were depressed. Multivariate logistic regression showed that survivors who were younger, were female, had ≥3 comorbid conditions, were functionally disabled from stroke, lacked emotional-social support, and who took antidepressants before study entry had higher risk of depression. Time since last stroke/transient ischemic attack did not affect the chance of depression. After adjusting for all above risk factors, latinos had 3× the odds of depression (95% confidence interval: 1.18-6.35) than whites; blacks and whites had similar odds of depression. CONCLUSIONS: This study reveals that latino stroke survivors have a significantly higher prevalence of depression compared with their non-latino counterparts.


Assuntos
Depressão/etnologia , Transtorno Depressivo/etnologia , Etnicidade/estatística & dados numéricos , Disparidades nos Níveis de Saúde , Ataque Isquêmico Transitório/etnologia , Pobreza/estatística & dados numéricos , Acidente Vascular Cerebral/etnologia , Negro ou Afro-Americano/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Idoso , Estudos de Coortes , Comorbidade , Depressão/psicologia , Transtorno Depressivo/psicologia , Pessoas com Deficiência/psicologia , Pessoas com Deficiência/estatística & dados numéricos , Etnicidade/psicologia , Feminino , Hispânico ou Latino/psicologia , Hispânico ou Latino/estatística & dados numéricos , Humanos , Vida Independente , Ataque Isquêmico Transitório/psicologia , Masculino , Pessoa de Meia-Idade , Prevalência , Fatores de Risco , Classe Social , Acidente Vascular Cerebral/psicologia , Sobreviventes/psicologia , Sobreviventes/estatística & dados numéricos , Estados Unidos/epidemiologia , População Branca/psicologia , População Branca/estatística & dados numéricos
17.
Prog Community Health Partnersh ; 9(3): 335-43, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26548784

RESUMO

BACKGROUND: East Harlem, New York, is a community actively struggling with diabetes and its complications, including vision-related conditions that can affect many aspects of daily life. OBJECTIVES: Vision Voice was a qualitative community-based participatory research (CBPR) study that intended to better understand the needs and experiences of people living with diabetes, other comorbid chronic illnesses, and vision loss in East Harlem. METHODS: Using photovoice methodology, four participants took photographs, convened to review their photographs, and determined overarching themes for the group's collective body of work. LESSONS LEARNED: Identified themes included effect of decreased vision function on personal independence/mobility and self-management of chronic conditions and the importance of informing community members and health care providers about these issues. The team next created a documentary film that further develops the narratives of the photovoice participants. CONCLUSIONS: The Vision Voice photovoice project was an effective tool to assess community needs, educate and raise awareness.


Assuntos
Cegueira/epidemiologia , Pesquisa Participativa Baseada na Comunidade/métodos , Diabetes Mellitus/epidemiologia , Comunicação em Saúde/métodos , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Multimídia , Adulto , Idoso , Complicações do Diabetes/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New York/epidemiologia
18.
Trials ; 15: 143, 2014 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-24767476

RESUMO

BACKGROUND: Hypertension is the leading global risk factor for mortality. Hypertension treatment and control rates are low worldwide, and delays in seeking care are associated with increased mortality. Thus, a critical component of hypertension management is to optimize linkage and retention to care. METHODS/DESIGN: This study investigates whether community health workers, equipped with a tailored behavioral communication strategy and smartphone technology, can increase linkage and retention of hypertensive individuals to a hypertension care program and significantly reduce blood pressure among them. The study will be conducted in the Kosirai and Turbo Divisions of western Kenya. An initial phase of qualitative inquiry will assess facilitators and barriers of linkage and retention to care using a modified Health Belief Model as a conceptual framework. Subsequently, we will conduct a cluster randomized controlled trial with three arms: 1) usual care (community health workers with the standard level of hypertension care training); 2) community health workers with an additional tailored behavioral communication strategy; and 3) community health workers with a tailored behavioral communication strategy who are also equipped with smartphone technology. The co-primary outcome measures are: 1) linkage to hypertension care, and 2) one-year change in systolic blood pressure among hypertensive individuals. Cost-effectiveness analysis will be conducted in terms of costs per unit decrease in blood pressure and costs per disability-adjusted life year gained. DISCUSSION: This study will provide evidence regarding the effectiveness and cost-effectiveness of strategies to optimize linkage and retention to hypertension care that can be applicable to non-communicable disease management in low- and middle-income countries. TRIAL REGISTRATION: This trial is registered with (NCT01844596) on 30 April 2013.


Assuntos
Serviços de Saúde Comunitária , Agentes Comunitários de Saúde , Comportamentos Relacionados com a Saúde , Hipertensão/terapia , Pacientes/psicologia , Projetos de Pesquisa , Serviços de Saúde Rural , População Negra/psicologia , Pressão Sanguínea , Telefone Celular , Protocolos Clínicos , Comunicação , Serviços de Saúde Comunitária/economia , Agentes Comunitários de Saúde/economia , Análise Custo-Benefício , Custos de Cuidados de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Hipertensão/diagnóstico , Hipertensão/economia , Hipertensão/etnologia , Hipertensão/fisiopatologia , Hipertensão/psicologia , Quênia/epidemiologia , Entrevista Motivacional , Cooperação do Paciente , Relações Profissional-Paciente , Serviços de Saúde Rural/economia , Fatores de Tempo , Resultado do Tratamento
19.
J Health Care Poor Underserved ; 24(2 Suppl): 168-92, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23727973

RESUMO

The rapidly rising rate of obesity has prompted a variety of policy responses at national, regional, and local levels. Yet, many have expressed concern that these policy responses have a limited evidence base, are overly paternalistic, and have the potential to increase rather than shrink obesity-related disparities. The purpose of this article is to evaluate obesity policies in terms of the adequacy of evidence for action and along two ethical dimensions: their potential effect on liberty and equity. To evaluate evidence, we engage in a systematic review of reviews and rate policies in terms of the sufficiency of evidence of effectiveness at combating obesity. We then apply a libertarian-paternalist framework to assess policies in terms of their impact on liberty and inverse-equity theory to assess impact on disparities. This article provides a framework to assist decision-makers in assessing best practices in obesity using a more multi-faceted set of dimensions.


Assuntos
Política de Saúde , Obesidade/prevenção & controle , Liberdade , Humanos , Paternalismo
20.
Int Public Health J ; 5(1): 99-104, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-25621099

RESUMO

East Harlem has the highest diabetes mortality rate in New York City, NY. Using Community Based Participatory Research principles, the East Harlem Partnership for Diabetes Prevention-a community- academic partnership-formed to build community capacity with a goal to address health disparities in East Harlem. As part of prevention efforts, community partners chose to study the prevalence of obstructive sleep apnea and its relationship to pre-diabetes and progression to diabetes. However, community partners insisted any study of sleep apnea go beyond simple assessment to ensure the largely uninsured, minority population enrolled also have access to state of the art diagnosis and treatment. Through compromise and collaboration, the partnership developed a culturally appropriate and scientifically rigorous method to diagnose and treat sleep apnea as part of a novel research program.

SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA