RESUMEN
INTRODUCTION: Alaska Native and American Indian (ANAI) people have a smoking prevalence of 23%. Nicotine metabolite ratio (NMR) and genetic testing may enable tailored selection of tobacco cessation medication. AIMS AND METHODS: The purpose of this study was to evaluate the relative contributions of NMR, cessation medication, demographics, and tobacco use history to cessation. Participants were recruited into an observational cohort study consisting of a baseline visit prior to their quit date and 6-week follow-up. Demographic and tobacco use surveys and blood, urine, and breath samples were collected at each visit. Electronic health records were queried for cessation medications. NMR was categorized into slow or normal nicotine metabolism phenotypes (<0.31 andâ ≥â 0.31, respectively). The main outcome was cessation at 6 weeks. Analyses consisted of descriptive statistics, medication and phenotype concordance, and estimates of relative risk (RR) of quitting. RESULTS: We enrolled 151 ANAI adults who smoked cigarettes daily. Two-thirds had normal nicotine metabolism phenotype. Retrospective medication and phenotype concordance was 39%. The overall quit rate was 25%. No demographic factors or tobacco use history were associated with quit success. Varenicline and bupropion increased the likelihood of quitting (RRâ =â 2.93 [1.42, 6.03] and RRâ =â 2.52 [1.12, 5.64], respectively) compared to nicotine replacement therapy. Non-optimal medication and phenotype concordance decreased likelihood of quit success (RRâ =â 0.44 [0.22, 0.91]) compared to optimal concordance. CONCLUSIONS: This exploratory study found associations between quit success and tobacco cessation medication as well as medication and phenotype concordance. Additional research is needed to assess use of NMR for treatment selection among ANAI people. IMPLICATIONS: These results broadly support additional community-engaged research to improve medication and phenotype concordance in tribal health settings. Such future research on implementing meditcation and phenotype concordance holds promise to improve expectations, quit success, and health outcomes amongst individuals attempting to quit smoking.
Asunto(s)
Cese del Hábito de Fumar , Factores Sociodemográficos , Adulto , Humanos , Indio Americano o Nativo de Alaska/genética , Nicotina/uso terapéutico , Agonistas Nicotínicos/uso terapéutico , Estudios Retrospectivos , Fumar/tratamiento farmacológico , Cese del Hábito de Fumar/métodos , Dispositivos para Dejar de Fumar TabacoRESUMEN
BACKGROUND: Food insecurity is an important social determinant of health that was exacerbated by the COVID-19 pandemic. Both food insecurity and COVID-19 infection disproportionately affect racial and ethnic minority groups, particularly American Indian and Alaska Native communities; however, there is little evidence as to whether food insecurity is associated with COVID-19 infection or COVID-19 preventive behaviors such as vaccination uptake. The purpose of this study was to evaluate associations between food insecurity, COVID-19 infection, and vaccination status among urban American Indian and Alaska Native adults seen at 5 clinics serving urban Native people. METHODS: In partnership with health organizations in Alaska, Colorado, Kansas, Minnesota, and New Mexico, the study team conducted a cross-sectional survey in 2021 to assess food security status and attitudes, barriers, and facilitators for COVID-19 testing and vaccination. Logistic regression was used to examine the association of food security status with sociodemographic factors and COVID-19 infection and vaccination status. Marginal standardization was applied to present results as prevalence differences. RESULTS: Among 730 American Indian and Alaska Native adults, the prevalence of food insecurity measured during the pandemic was 38%. For participants who reported persistent food security status before and during the pandemic (n = 588), the prevalence of food insecurity was 25%. Prevalence of COVID-19 infection and vaccination did not vary by food security status after adjustment for confounders. CONCLUSIONS: High rates of food insecurity among American Indian and Alaska Native communities likely increased during the COVID-19 pandemic. However, despite the high prevalence of food insecurity, community-led efforts to reduce COVID-19 infection and increase vaccination uptake across Indian Health Service and Tribal healthcare facilities may have mitigated the negative impacts of the pandemic for families experiencing food insecurity. These successful approaches serve as an important reference for future public health efforts that require innovative strategies to improve overall health in American Indian and Alaska Native communities.
Asunto(s)
Indio Americano o Nativo de Alaska , COVID-19 , Inseguridad Alimentaria , Adulto , Humanos , COVID-19/epidemiología , Prueba de COVID-19 , Estudios Transversales , PandemiasRESUMEN
BACKGROUND: Home blood pressure monitoring (HBPM) is an effective tool in treatment and long-term management of hypertension. HBPM incorporates more data points to help patients and providers with diagnosis and management. The characteristics of HBPM devices matter to patients, but the relative importance of the characteristics in choosing a device remains unclear. METHODS: We used data from a randomized cross-over pilot study with 100 Alaska Native and American Indian (ANAI) people with hypertension to assess the choice of a wrist or arm HBPM device. We use a random utility framework to evaluate the relationship between stated likely use, perceived accuracy, ease of use, comfort, and participant characteristics with choice of device. Additional analyses examined willingness to change to a more accurate device. RESULTS: Participants ranked the wrist device higher compared to the arm on a 5-point Likert scale for likely use, ease of use, and comfort (0.3, 0.5, 0.8 percentage points, respectively). Most participants (66%) choose the wrist device. Likely use (wrist and arm devices) was related to the probability of choosing the wrist (0.7 and - 1.4 percentage points, respectively). Independent of characteristics, 75% of participants would be willing to use the more accurate device. Ease of use (wrist device) and comfort (arm device) were associated with the probability of changing to a more accurate device (- 1.1 and 0.5 percentage points, respectively). CONCLUSION: Usability, including comfort, ease, and likely use, appeared to discount the relative importance of perceived accuracy in the device choice. Our results contribute evidence that ANAI populations value accurate HBPM, but that the devices should also be easy to use and comfortable to facilitate long-term management.
Asunto(s)
Algoritmos , Indio Americano o Nativo de Alaska , Monitoreo Ambulatorio de la Presión Arterial/instrumentación , Presión Sanguínea/fisiología , Hipertensión/diagnóstico , Estudios Cruzados , Femenino , Humanos , Hipertensión/etnología , Hipertensión/fisiopatología , Masculino , Persona de Mediana Edad , Cooperación del Paciente , Proyectos Piloto , Reproducibilidad de los Resultados , Estados Unidos/epidemiologíaRESUMEN
OBJECTIVES: To examine the relationships between pre-pregnancy diabetes mellitus (DM), gestational diabetes mellitus (GDM), pre-pregnancy body mass index (BMI) and county-level social determinants of health, with infant macrosomia within a sample of American Indian/Alaska Native (AI/AN) women receiving Indian Health Service (IHS) care. METHODS: The sample included women-infant dyads representing 1,136 singleton births from fiscal year 2011 (10/1/2019-9/30/2011). Data stemmed from the IHS Improving Health Care Delivery Data Project. Multivariate generalized linear mixed models were fitted to assess the association of macrosomia with pre-pregnancy health status and social determinants of health. RESULTS: Nearly half of the women in the sample were under age 25 years (48.6%), and most had Medicaid health insurance coverage (76.7%). Of those with a pre-pregnancy BMI measure, 66.2% were overweight or obese. Although few women had pre-pregnancy DM (4.0%), GDM was present in 12.8% of women. Most women had a normal term delivery (85.4%). Overweight, obesity, pre-pregnancy DM, and county-level rurality were all significantly associated with higher odds of infant macrosomia.
Asunto(s)
Diabetes Gestacional , Embarazo , Lactante , Femenino , Humanos , Adulto , Macrosomía Fetal/epidemiología , Sobrepeso , Indio Americano o Nativo de Alaska , Aumento de Peso , Diabetes Gestacional/epidemiología , Peso al Nacer , Índice de Masa Corporal , Obesidad , Estado de SaludRESUMEN
We provide guidance for conducting clinical trials with Indigenous children in the United States. We drew on extant literature and our experience to describe 3 best practices for the ethical and effective conduct of clinical trials with Indigenous children. Case examples of pediatric research conducted with American Indian, Alaska Native, and Native Hawaiian communities are provided to illustrate these practices. Ethical and effective clinical trials with Indigenous children require early and sustained community engagement, building capacity for Indigenous research, and supporting community oversight and ownership of research. Effective engagement requires equity, trust, shared interests, and mutual benefit among partners over time. Capacity building should prioritize developing Indigenous researchers. Supporting community oversight and ownership of research means that investigators should plan for data-sharing agreements, return or destruction of data, and multiple regulatory approvals. Indigenous children must be included in clinical trials to reduce health disparities and improve health outcomes in these pediatric populations. Establishment of the Environmental Influences on Child Health Outcomes Institutional Development Award States Pediatric Clinical Trials Network (ECHO ISPCTN) in 2016 creates a unique and timely opportunity to increase Indigenous children's participation in state-of-the-art clinical trials.
Asunto(s)
/estadística & datos numéricos , Creación de Capacidad/organización & administración , Protección a la Infancia/estadística & datos numéricos , Ensayos Clínicos como Asunto/normas , Indígenas Norteamericanos/estadística & datos numéricos , Niño , Humanos , Proyectos de Investigación , Seguridad , Estados UnidosRESUMEN
Meaningful engagement of Alaska Native (AN) tribes and tribal health organizations is essential in the conduct of socially responsible and ethical research. As genomics becomes increasingly important to advancements in medicine, there is a risk that populations not meaningfully included in genomic research will not benefit from the outcomes of that research. AN people have historically been underrepresented in biomedical research; AN underrepresentation in genomics research is compounded by mistrust based on past abuses, concerns about privacy and data ownership, and cultural considerations specific to this type of research. Working together, the National Human Genome Research Institute and two Alaska Native health organizations, Southcentral Foundation and the Alaska Native Health Board, cosponsored a workshop in July 2018 to engage key stakeholders in discussion, strengthen relationships, and facilitate partnership and consideration of participation of AN people in community-driven biomedical and genomic research. AN priorities related to translation of genomics research to health and health care, return of genomic results, design of research studies, and data sharing were discussed. This report summarizes the perspectives that emerged from the dialogue and offers considerations for effective and socially responsible genomic research partnerships with AN communities.
Asunto(s)
Investigación Biomédica , Indígenas Norteamericanos , /genética , Genómica , Humanos , Difusión de la InformaciónRESUMEN
INTRODUCTION: Alaska Native and American Indian (AN/AI) populations have higher tobacco use prevalence than other ethnic/racial groups. Pharmacogenetic testing to tailor tobacco cessation treatment may improve cessation rates. This study characterized polymorphic variations among AN/AI people in genes associated with metabolism of nicotine and drugs used for tobacco cessation. METHODS: Recruitment of AN/AI individuals represented six subgroups, five geographic subgroups throughout Alaska and a subgroup comprised of AIs from the lower 48 states living in Alaska. We sequenced the CYP2A6 and CYP2B6 genes to identify known and novel gain, reduced, and loss-of-function alleles, including structural variation (eg, gene deletions, duplications, and hybridizations). RESULTS: Variant allele frequencies differed substantially between AN/AI subgroups. The gene deletion CYP2A6*4 and reduced function CYP2A6*9 alleles were found at high frequency in Northern/Western subgroups and in Lower 48/Interior subgroups, respectively. The reduced function CYP2B6*6 allele was observed in all subgroups and a novel, predicted reduced function CYP2B6 variant was found at relatively high frequency in the Southeastern subgroup. CONCLUSIONS: Diverse CYP2A6 and CYP2B6 variation among the subgroups highlight the need for comprehensive pharmacogenetic testing to guide tobacco cessation therapy for AN/AI populations. IMPLICATIONS: Nicotine metabolism is largely determined by CYP2A6 genotype, and variation in CYP2A6 activity has altered the treatment success in other populations. These findings suggest pharmacogenetic-guided smoking cessation drug treatment could provide benefit to this unique population seeking tobacco cessation therapy.
Asunto(s)
Citocromo P-450 CYP2A6/genética , Citocromo P-450 CYP2B6/genética , Nicotina/metabolismo , Farmacogenética , Agentes para el Cese del Hábito de Fumar/farmacología , Fumar/tratamiento farmacológico , Fumar/genética , Adolescente , Adulto , Anciano , Alaska , /estadística & datos numéricos , Variación Genética , Genotipo , Humanos , Indígenas Norteamericanos/genética , Indígenas Norteamericanos/estadística & datos numéricos , Persona de Mediana Edad , Fumar/epidemiología , Cese del Hábito de Fumar/métodos , Adulto JovenRESUMEN
BACKGROUND: For populations with high rates of trauma exposure yet low behavioural health service use, identifying and addressing trauma in the primary care setting could improve health outcomes, reduce disability and increase the efficiency of health system resources. OBJECTIVE: To assess the acceptability and feasibility of a screening, brief intervention and referral to treatment (SBIRT) process for trauma and symptoms of posttraumatic stress disorder (PTSD) among American Indian and Alaska Native people. We also examine the short-term effects on service utilization and the screening accuracy of the Primary Care Posttraumatic Stress Disorder Screen. METHODS: Cross-sectional pilot in two tribal primary care settings. Surveys and interviews measured acceptability among patients and providers. Health service utilization was used to examine impact. Structured clinical interview and a functional disability measure were used to assess screening accuracy. RESULTS: Over 90% of patient participants (N = 99) reported the screening time was acceptable, the questions were easily understood, the right staff were involved and the process satisfactory. Ninety-nine percent would recommend the process. Participants screening positive had higher behavioural health utilization in the 3 months after the process than those screening negative. The Primary Care Posttraumatic Stress Disorder Screen was 100% sensitive to detect current PTSD with 51% specificity. Providers and administrators reported satisfaction with the process. CONCLUSIONS: The SBIRT process shows promise for identifying and addressing trauma in primary care settings. Future research should explore site specific factors, cost analyses and utility compared to other behavioural health screenings.
Asunto(s)
Indígenas Norteamericanos , Atención Primaria de Salud , Trastornos por Estrés Postraumático/diagnóstico , Adulto , Intervención en la Crisis (Psiquiatría) , Estudios Transversales , Femenino , Humanos , Masculino , Tamizaje Masivo , Persona de Mediana Edad , Proyectos Piloto , Trauma Psicológico/diagnóstico , Trauma Psicológico/psicología , Trauma Psicológico/terapia , Derivación y Consulta , Trastornos por Estrés Postraumático/psicología , Trastornos por Estrés Postraumático/terapia , Encuestas y CuestionariosRESUMEN
Although alcohol misuse is a priority for health care systems serving Alaska Native and American Indian (ANAI) people, stakeholders' perceptions of misuse are understudied. Patients (n = 34), providers (n = 20), and leaders (n = 16) at a Tribally owned and operated health care system reported that alcohol misuse results from the interaction of factors, including colonization, structural factors, social alienation, social norms about overdrinking introduced at the time of colonizing contact, coping with emotions, and beliefs about ANAI people and alcohol. Childhood exposure to alcohol misuse leads some ANAI people to avoid alcohol altogether, shedding light on the high levels of abstinence observed in ANAI communities.
Asunto(s)
/estadística & datos numéricos , Trastornos Relacionados con Alcohol/etnología , Actitud Frente a la Salud/etnología , Percepción Social , Alaska/epidemiología , Femenino , Humanos , Indígenas Norteamericanos/estadística & datos numéricos , Masculino , Factores SocioeconómicosRESUMEN
BACKGROUND: Alaska Native and American Indian people (AN/AIs) have a high incidence of colorectal cancer (CRC) and CRC-related mortality. Screening can prevent death from CRC, but screening rates are low in racially and ethnically diverse populations. The authors conducted a randomized controlled trial using text messaging to increase CRC screening among unscreened AN/AIs in a tribal health care system in Anchorage, Alaska. METHODS: The intervention entailed up to 3 text messages sent 1 month apart. The authors randomized 2386 AN/AIs aged 40 to 75 years who were eligible for CRC screening to the intervention or usual-care control conditions. Screening status was ascertained from electronic health records 3 months and 6 months after the last text message. Hazard ratios (HRs) were estimated to evaluate the effectiveness of the intervention, stratified by age and sex. RESULTS: The intervention increased CRC screening for AN/AIs aged 50 to 75 years (HR, 1.42; 95% confidence interval [95% CI], 0.97-2.09) and aged 40 to 49 years (HR, 1.24; 95% CI, 0.95-1.62). Within both age groups, the HRs were higher for women (HR, 1.69 [95% CI, 1.02-2.80] and HR, 1.37 [95% CI, 1.01-1.88]) compared with men (HR, 1.09 [95% CI, 0.59-1.99] and HR, 0.90 [95% CI, 0.54-1.53]). Interaction analysis yielded P values of .55 and .09, respectively, for age and sex. CONCLUSIONS: A simple text messaging intervention was found to increase CRC screening rates in AN/AIs, a group with high CRC morbidity and mortality. Text messaging may be a cost-effective means of reducing CRC screening disparities in AN/AIs and other populations. Cancer 2017;123:1382-1389. © 2016 American Cancer Society.
Asunto(s)
Neoplasias Colorrectales/epidemiología , Detección Precoz del Cáncer , Indígenas Norteamericanos , Envío de Mensajes de Texto , Adulto , Anciano , Alaska/epidemiología , Neoplasias Colorrectales/diagnóstico , Femenino , Humanos , Masculino , Tamizaje Masivo , Persona de Mediana Edad , Factores de RiesgoRESUMEN
OBJECTIVES: Pharmacogenetic testing is projected to improve health outcomes and reduce the cost of care by increasing therapeutic efficacy and minimizing drug toxicity. American Indian and Alaska Native (AI/AN) people historically have been excluded from pharmacogenetic research and its potential benefits, a deficiency we sought to address. The vitamin K antagonist warfarin is prescribed for prevention of thromboembolic events, although its narrow therapeutic index and wide interindividual variability necessitate close monitoring of drug response. Therefore, we were interested in variation in CYP2C9, VKORC1, CYP4F2, CYP4F11, and GGCX, which encode enzymes important for the activity of warfarin and synthesis of vitamin K-dependent blood clotting factors. METHODS: We resequenced these genes in 188 AI/AN people in partnership with Southcentral Foundation in Anchorage, Alaska and 94 Yup'ik people living in the Yukon-Kuskokwim Delta of southwest Alaska to identify known or novel function-disrupting variation. We conducted genotyping for specific single nucleotide polymorphisms in larger cohorts of each study population (380 and 350, respectively). RESULTS: We identified high frequencies of the lower-warfarin dose VKORC1 haplotype (-1639G>A and 1173C>T) and the higher-warfarin dose CYP4F2*3 variant. We also identified two relatively common, novel, and potentially function-disrupting variants in CYP2C9 (M1L and N218I), which, along with CYP2C9*3, CYP2C9*2, and CYP2C9*29, predict that a significant proportion of AI/AN people will have decreased CYP2C9 activity. CONCLUSION: Overall, we predict a lower average warfarin dose requirement in AI/AN populations in Alaska than that seen in non-AI/AN populations of the USA, a finding consistent with clinical experience in Alaska.
Asunto(s)
/genética , Anticoagulantes/administración & dosificación , Anticoagulantes/farmacocinética , Indígenas Norteamericanos/genética , Warfarina/administración & dosificación , Warfarina/farmacocinética , Alaska , Ligasas de Carbono-Carbono/genética , Citocromo P-450 CYP2C9/genética , Familia 4 del Citocromo P450/genética , Femenino , Frecuencia de los Genes , Variación Genética , Genotipo , Humanos , Desequilibrio de Ligamiento , Masculino , Polimorfismo de Nucleótido Simple , Vitamina K/antagonistas & inhibidores , Vitamina K Epóxido Reductasas/genéticaRESUMEN
PURPOSE: Southcentral Foundation, an Alaska Native tribal health organization, has had a depression screening program in primary care since 2001. Program monitoring identified gaps in antidepressant refills and patients' follow-up with behavioral health services. With extensive stakeholder participation, we developed an electronic, patient-centered, depression-management decision support tool (DM-DST). Quality of life and other outcomes are being assessed in a separate study; this case study reports on the multi-year stakeholder engagement process. METHODS: Data sources included interviews with patients and providers from integrated primary care teams, notes from research meetings, steering committee meetings, and consultations with tribal health system leadership, human subjects review committees, providers, and software designers, and a pilot test of the DS-DMT with patients and providers. We analyzed these sources using qualitative methods to assess the impact of stakeholder input on project processes and outcomes. RESULTS: One comprehensive, iPad-based tool was originally planned to facilitate discussions about depression management. Stakeholder input emphasized the role of family and cultural context of depression and management and improving the usability of the DM-DST. Stakeholder direction led us to split the DM-DST into: (1) a brief iPad-based tool to facilitate conversations between patients and providers during clinic visits; and (2) a complementary Web site that provides detailed information and allows patients flexibility and time to learn more about depression and share information and preferences with family and friends. CONCLUSIONS: Stakeholder input across the project substantially modified the DM-DST to ensure cultural applicability to patients and providers and facilitate integration into clinics.
Asunto(s)
Servicios de Salud Comunitaria/métodos , Toma de Decisiones Asistida por Computador , Trastorno Depresivo/terapia , Indígenas Norteamericanos/psicología , Atención Primaria de Salud/métodos , Adulto , Redes Comunitarias , Recolección de Datos , Trastorno Depresivo/diagnóstico , Femenino , Humanos , Masculino , Tamizaje Masivo/métodos , Calidad de Vida , Proyectos de InvestigaciónRESUMEN
The data-sharing policies of the National Institutes of Health aim to maximize public benefit derived from genetic studies by increasing research efficiency and use of a pooled data resource for future studies. Although broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports the tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data-sharing procedures that take into account tribal sovereignty and appropriate oversight of research--such as tribally based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by the National Institutes of Health as part of the research process.
Asunto(s)
Redes Comunitarias/organización & administración , Difusión de la Información/legislación & jurisprudencia , Investigación Biomédica Traslacional/legislación & jurisprudencia , Redes Comunitarias/legislación & jurisprudencia , Humanos , Indígenas Norteamericanos , Difusión de la Información/ética , National Institutes of Health (U.S.) , Estados Unidos , UniversidadesRESUMEN
Studies indicate nicotine metabolism varies by race and can change during pregnancy. Given high rates of tobacco use and limited studies among Alaska Native (AN) women, we estimated associations of saliva cotinine levels with cigarette use and second-hand smoke (SHS) exposure and estimated a saliva cotinine cutoff to distinguish smoking from non-smoking pregnant AN women. Using questionnaire data and saliva cotinine, we utilized multi-variable linear regression (n = 370) to estimate cotinine associations with tobacco use, SHS exposure, demographic, and pregnancy-related factors. Additionally, we estimated an optimal saliva cotinine cutoff for indication of active cigarette use in AN pregnant women using receiver operating characteristic (ROC) curve analysis (n = 377). Saliva cotinine significantly decreased with maternal age and significantly increased with cigarettes smoked per day, SHS exposure, and number of previous full term pregnancies. Using self-reported cigarette use in the past 7 days as indication of active smoking, the area under the ROC curve was 0.975 (95 % CI: 0.960-0.990). The point closest to 100 % specificity and sensitivity occurred with a cotinine concentration of 1.07 ng/mL, which corresponded to sensitivity of 94 % and specificity of 94 %. We recommend using a saliva cotinine cutoff of 1 ng/mL to distinguish active smoking in pregnant AN women. This cutoff is lower than used in other studies with pregnant women, most likely due to high prevalence of light or intermittent smoking in the AN population. Continued study of cotinine levels in diverse populations is needed.
Asunto(s)
Cotinina/análisis , Mujeres Embarazadas/etnología , Fumar/etnología , Adulto , Alaska/epidemiología , Femenino , Humanos , Indígenas Norteamericanos/estadística & datos numéricos , Inuk/estadística & datos numéricos , Embarazo , Curva ROC , Saliva/química , Sensibilidad y Especificidad , Fumar/metabolismo , Encuestas y Cuestionarios , Contaminación por Humo de Tabaco/análisis , Adulto JovenRESUMEN
Objective: Create a longitudinal, multi-modal and multi-level surveillance cohort that targets early detection of symptomatic and asymptomatic COVID-19 cases among Native Hawaiian and Pacific Islander adults in the Continental US and identify effective modalities for participatory disease surveillance and sustainably integrate them into ongoing COVID-19 and other public health surveillance efforts. Materials and methods: We recruited cohorts from three sites: Federal Way, WA; Springdale, AR; and remotely. Participants received a survey that included demographic characteristics and questions regarding COVID-19. Participants completed symptom checks via text message every month and recorded their temperature daily using a Kinsa smart thermometer. Results: Recruitment and data collection is ongoing. Presently, 441 adults have consented to participate. One-third of participants were classified as essential workers during the pandemic. Discussion: Over the past 18 months, we have improved our strategies to elicit better data from participants and have learned from some of the weaknesses in our initial deployment of this type of surveillance system. Other limitations stem from historic inequities and barriers which limited Native Hawaiian and Pacific Island representation in academic and clinical environments. One manifestation of this was the limited ability to provide study materials and support in multiple languages. We hope that continued partnership with the community will allow further opportunities to help restore trust in academic and medical institutions, thus generating knowledge to advance health equity. Conclusion: This participatory disease surveillance mechanism complements traditional surveillance systems by engaging underserved communities. We may also gain insights generalizable to other pathogens of concern.
RESUMEN
Health disparities are driven by unequal conditions in the environments in which people are born, live, learn, work, play, worship, and age, commonly termed the Social Determinants of Health (SDoH). The availability of recommended measurement protocols for SDoH will enable investigators to consistently collect data for SDoH constructs. The PhenX (consensus measures for Phenotypes and eXposures) Toolkit is a web-based catalog of recommended measurement protocols for use in research studies with human participants. Using standard protocols from the PhenX Toolkit makes it easier to compare and combine studies, potentially increasing the impact of individual studies, and aids in comparability across literature. In 2018, the National Institute on Minority Health and Health Disparities provided support for an initial expert Working Group to identify and recommend established SDoH protocols for inclusion in the PhenX Toolkit. In 2022, a second expert Working Group was convened to build on the work of the first SDoH Working Group and address gaps in the SDoH Toolkit Collections. The SDoH Collections consist of a Core Collection and Individual and Structural Specialty Collections. This article describes a Basic Protocol for using the PhenX Toolkit to select and implement SDoH measurement protocols for use in research studies. © 2024 The Authors. Current Protocols published by Wiley Periodicals LLC. This article has been contributed to by U.S. Government employees and their work is in the public domain in the USA. Basic Protocol: Using the PhenX Toolkit to select and implement SDoH protocols.
Asunto(s)
Academias e Institutos , Determinantes Sociales de la Salud , Humanos , Consenso , Estudios Epidemiológicos , Empleados de GobiernoRESUMEN
Health equity is the state in which everyone has fair and just opportunities to attain their highest level of health. The field of human genomics has fallen short in increasing health equity, largely because the diversity of the human population has been inadequately reflected among participants of genomics research. This lack of diversity leads to disparities that can have scientific and clinical consequences. Achieving health equity related to genomics will require greater effort in addressing inequities within the field. As part of the commitment of the National Human Genome Research Institute (NHGRI) to advancing health equity, it convened experts in genomics and health equity research to make recommendations and performed a review of current literature to identify the landscape of gaps and opportunities at the interface between human genomics and health equity research. This Perspective describes these findings and examines health equity within the context of human genomics and genomic medicine.
Asunto(s)
Genómica , Equidad en Salud , Humanos , Genómica/métodos , Estados Unidos , Genoma Humano , National Human Genome Research Institute (U.S.)RESUMEN
OBJECTIVES: Pharmacogenetic research and clinical testing raise important concerns for individuals and communities, especially where past medical research and practice has perpetrated harm and cultivated distrust of health care systems and clinicians. We investigated perceptions of pharmacogenetics among Alaska Native (AN) people. METHODS: We held four focus groups for 32 ANs in south central Alaska to elicit views about pharmacogenetics in general and for treatment of cardiovascular disease, breast cancer, depression, and nicotine addiction. We analyzed data for perceived risks and rewards of pharmacogenetics. RESULTS: Potential risks of pharmacogenetics included health care rationing, misuse of information, and stigma to individuals and the AN community. Potential rewards included decreased care costs, improved outcomes, and community development. Participants also discussed 8 contingent conditions that could mitigate risks and increase pharmacogenetic acceptability. CONCLUSIONS: Alaska Natives perceive pharmacogenetics as potentially benefitting and harming individuals, communities, and health systems, depending on methods and oversight. Researchers, clinicians, and administrators, especially in community-based clinic and health care systems serving minority populations, must address this "double-edged sword" to effectively conduct pharmacogenetics.
Asunto(s)
Investigación Biomédica , Pruebas Genéticas , Conocimientos, Actitudes y Práctica en Salud , Inuk/psicología , Farmacogenética , Recompensa , Adolescente , Adulto , Alaska/etnología , Femenino , Grupos Focales , Humanos , Inuk/genética , Masculino , Investigación Cualitativa , Medición de Riesgo , Confianza , Adulto JovenRESUMEN
PURPOSE: This study describes key elements of the transition to a patient-centered medical home (PCMH) model at Southcentral Foundation (SCF), a tribally owned and managed primary care system, and evaluates changes in emergency care use for any reason, for asthma, and for unintentional injuries, during and after the transition. METHODS: We conducted a time series analyses of emergency care use from medical record data. We also conducted 45 individual, in-depth interviews with PCMH patients (customer-owners), primary care clinicians, health system employees, and tribal leaders. RESULTS: Emergency care use for all causes was increasing before the PCMH implementation, dropped during and immediately after the implementation, and subsequently leveled off. Emergency care use for adult asthma dropped before, during, and immediately after implementation, subsequently leveling off approximately 5 years after implementation. Emergency care use for unintentional injuries, a comparison variable, showed an increasing trend before and during implementation and decreasing trends after implementation. Interview participants observed improved access to primary care services after the transition to the PCMH tempered by increased staff fatigue. Additional themes of PCMH transformation included the building of relationships for coordinated, team-based care, and the important role of leadership in PCMH implementation. CONCLUSIONS: All reported measures of emergency care use show a decreasing trend after the PCMH implementation. Before the implementation, overall use and use for unintentional injuries had been increasing. The combined quantitative and qualitative results are consistent with decreased emergency care use resulting from a decreased need for emergency care services due to increased availability of primary care services and same-day appointments.
Asunto(s)
Evaluación de Procesos y Resultados en Atención de Salud , Atención Dirigida al Paciente/organización & administración , Atención Primaria de Salud/organización & administración , Alaska , Atención Integral de Salud/organización & administración , Accesibilidad a los Servicios de Salud , Humanos , Indígenas Norteamericanos , Inuk , Grupo de Atención al Paciente , Atención Primaria de Salud/estadística & datos numéricosRESUMEN
Type 2 diabetes is a worldwide health problem that has reached epidemic proportions in some communities. Alaska Native and American Indian (AN/AI) people are disproportionately diagnosed with type 2 diabetes and incidence is increasing in many Alaska communities. Developing effective interventions requires understanding the social and psychological factors that impact effective management of diabetes, yet little is known about these factors in AN/AI communities. The objective of this study was to explore perceived psychosocial needs and barriers to management of diabetes among AN/AI adults with type 2 diabetes receiving care at the Alaska Native Primary Care Center (ANPCC) to inform programmatic efforts and potential future research. We conducted three focus groups and five interviews with 13 AN/AI adults with type 2 diabetes. Interview and focus group questions elicited perceived factors that affect management of diabetes, with a focus on the psychological, social and spiritual impacts of diabetes. Data were transcribed, coded and analyzed using thematic analysis. Key themes that emerged from these data included resources and roadblocks, as well as turning points in the trajectory of diabetes. Resources are factors with a perceived positive impact on management of diabetes, including: (1) knowledge and education about diabetes, (2) social support from other people with diabetes, (3) spirituality, and (4) self-efficacy. Roadblocks are factors with a perceived negative impact on management of diabetes and include: (1) self-reported lack of knowledge about nutrition and diet, (2) social difficulties caused by dietary restrictions, and (3) co-morbid medical conditions. Finally, turning points are experiences described by participants as having transformed roadblocks in resources and thus facilitating improvement in the management of diabetes. Future programmatic interventions to improve management of diabetes with this population should focus on improving dietary education and social support opportunities for newly-diagnosed individuals. Also, educational and support opportunities for family members and friends of individuals with diabetes should also be offered to facilitate understanding and support of their loved ones' management of diabetes, especially with regard to dietary restrictions in social settings. Efforts should also focus on strengthening newly-diagnosed individuals' self-efficacy and providing ongoing support as individuals progressively adjust to the illness over time and make behavioral changes. Future research with this population should explore the effects of family support groups and the possibility of Web-based or other alternative interventions for improving psychosocial health and management of diabetes efforts.