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1.
J Health Care Poor Underserved ; 31(3): 1347-1363, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33416699

RESUMO

PURPOSE: As new genetic services become available, their implementation in safety-net settings must be studied. METHODS: We interviewed stakeholders (patients and primary care clinicians) from federally qualified health centers to discuss the utility, acceptability, and priority of new genetic services. We presented scenarios tailored for each audience describing carrier testing, diagnostic testing for a developmental delay, and hereditary cancer syndrome testing. We summarized transcripts using the framework method and compared patient and clinician perspectives. RESULTS: Clinicians questioned the relevance and priority of genetic services. Hereditary cancer testing was perceived most favorably by clinicians, who focused on actionability, cost, and access to downstream care. Patients stated that access to genetic services was important and that there should be parity across safety-net and higher-resourced settings. CONCLUSIONS: Genetic services with clear clinical impact are more acceptable to clinicians in safety-net clinics. Clinicians may be underestimating patients' interest in expanded genetic services.


Assuntos
Atenção Primária à Saúde , Provedores de Redes de Segurança , Serviços em Genética , Serviços de Saúde , Humanos
2.
N Engl J Med ; 352(17): 1769-78, 2005 Apr 28.
Artigo em Inglês | MEDLINE | ID: mdl-15858186

RESUMO

BACKGROUND: Iron overload and hemochromatosis are common, treatable conditions. HFE genotypes, levels of serum ferritin, transferrin saturation values, and self-reported medical history were studied in a multiethnic primary care population. METHODS: Participants were recruited from primary care practices and blood-drawing laboratories. Blood samples were tested for transferrin saturation, serum ferritin, and C282Y and H63D mutations of the HFE gene. Before genetic screening, participants were asked whether they had a history of medical conditions related to iron overload. RESULTS: Of the 99,711 participants, 299 were homozygous for the C282Y mutation. The estimated prevalence of C282Y homozygotes was higher in non-Hispanic whites (0.44 percent) than in Native Americans (0.11 percent), Hispanics (0.027 percent), blacks (0.014 percent), Pacific Islanders (0.012 percent), or Asians (0.000039 percent). Among participants who were homozygous for the C282Y mutation but in whom iron overload had not been diagnosed (227 participants), serum ferritin levels were greater than 300 mug per liter in 78 of 89 men (88 percent) and greater than 200 microg per liter in 79 of 138 women (57 percent). Pacific Islanders and Asians had the highest geometric mean levels of serum ferritin and mean transferrin saturation despite having the lowest prevalence of C282Y homozygotes. There were 364 participants in whom iron overload had not been diagnosed (29 C282Y homozygotes) who had a serum ferritin level greater than 1000 microg per liter. Among men, C282Y homozygotes and compound heterozygotes were more likely to report a history of liver disease than were participants without HFE mutations. CONCLUSIONS: The C282Y mutation is most common in whites, and most C282Y homozygotes have elevations in serum ferritin levels and transferrin saturation. The C282Y mutation does not account for high mean serum ferritin levels and transferrin saturation values in nonwhites.


Assuntos
Ferritinas/sangue , Hemocromatose/genética , Antígenos de Histocompatibilidade Classe I/genética , Proteínas de Membrana/genética , Mutação , Transferrina/análise , Artrite/etiologia , Complicações do Diabetes , Feminino , Frequência do Gene , Genótipo , Cardiopatias/etiologia , Hemocromatose/complicações , Hemocromatose/etnologia , Proteína da Hemocromatose , Homozigoto , Humanos , Ferro , Sobrecarga de Ferro/sangue , Sobrecarga de Ferro/epidemiologia , Sobrecarga de Ferro/etnologia , Sobrecarga de Ferro/genética , Hepatopatias/etiologia , Modelos Logísticos , Masculino , Fenótipo , Distribuição por Sexo , Estados Unidos/epidemiologia
3.
Genet Test ; 12(4): 491-500, 2008 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-18939938

RESUMO

AIM: The purpose of this study was to assess the level of satisfaction and understanding of test results, by a sample of non-C282Y homozygous participants in the hemochromatosis and iron overload screening (HEIRS) study, who received serum ferritin (SF), transferrin saturation (TS), and HFE gene test results by mail. METHODS: Approximately 1 month after receiving test results by mail, participants were surveyed about understanding of and satisfaction with results notification. RESULTS: Overall, participants were satisfied with receiving test results by mail. Participants receiving results with one or two HFE mutations or TS and/or SF levels outside the normal range (an "alert value") were less likely to be satisfied with this method of notification. Participants with normal HFE test results understood their results and recommendations better than those with one or two mutations. Although all participants received results letters in their native language, English-speaking participants had higher mean understanding scores than Mandarin, Vietnamese, or Spanish-speaking participants. CONCLUSION: Participants were satisfied with receiving test results by mail. However, the level of understanding of the results was not sufficient for this mode of results notification to stand alone, especially for non-English speaking participants, and all participants with one or more test results outside the normal range.


Assuntos
Hemocromatose/diagnóstico , Hemocromatose/genética , Sobrecarga de Ferro/diagnóstico , Sobrecarga de Ferro/genética , Adulto , Idoso , Compreensão , Notificação de Doenças , Feminino , Ferritinas/sangue , Testes Genéticos , Hemocromatose/sangue , Proteína da Hemocromatose , Antígenos de Histocompatibilidade Classe I/genética , Humanos , Sobrecarga de Ferro/sangue , Masculino , Programas de Rastreamento , Proteínas de Membrana/genética , Pessoa de Meia-Idade , Mutação , Satisfação do Paciente , Serviços Postais , Inquéritos e Questionários , Transferrina/metabolismo
4.
Arch Intern Med ; 167(7): 722-6, 2007 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-17420432

RESUMO

BACKGROUND: Asians and Pacific Islanders in the Hemochromatosis and Iron Overload Screening (HEIRS) Study had the highest prevalence of elevated serum ferritin (SF) and transferrin saturation (TS) levels, but to our knowledge, the reasons for this have not been investigated. METHODS: Using multiple linear regression, we compared TS and SF distributions for 42 720 Asian, Pacific Islander, and white HEIRS Study participants recruited through 5 field centers in North America who did not have HFE C282Y or H63D alleles. RESULTS: Compared with their white counterparts, Asian men had a 69-ng/mL (155-pmol/L) higher adjusted mean SF level and a 3% higher TS level (P<.001); Asian women had 23-ng/mL (52-pmol/L) higher adjusted mean SF level and a 3% higher TS level (P<.001). The mean TS level of Asian women was higher than that of Pacific Islander women, and the mean SF level of Pacific Islander men was significantly higher than that of white men. These differences remained significant after adjusting for self-reported history of diabetes or liver disease. Additional information for selected participants suggested that these differences are largely unrelated to mean corpuscular volume less than 80 fL, body mass index, or self-reported alcohol intake. Available liver biopsy and phlebotomy data indicated that iron overload is probably uncommon in Asian participants. CONCLUSION: Higher TS and SF levels in persons of Asian or Pacific Island heritage may need to be interpreted differently than for whites, although the biological basis and clinical significance of higher levels among Asians and Pacific Islanders are unclear.


Assuntos
Asiático , Ferritinas/sangue , Havaiano Nativo ou Outro Ilhéu do Pacífico , Transferrina/metabolismo , População Branca , Povo Asiático , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
5.
Genet Med ; 9(11): 778-91, 2007 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-18007147

RESUMO

PURPOSE: We assessed the effectiveness of educational interventions for conveying clinical findings and information about hereditary hemochromatosis (HH) and iron overload (IO) to individuals evaluated clinically after initial screening for HH/IO with serum ferritin (SF) concentration, transferrin saturation (TS), and HFE genotyping. METHODS: A questionnaire mailed to 2300 cases and controls 1 month after a letter summarizing clinical findings measured understanding of results and recommendations, knowledge of HH/IO, and satisfaction with information received. RESULTS: Of 1622 (70.5%) participants completing relevant items, 83.6% were satisfied with receiving initial screening results by mail, 93.4% found information clear and easy to understand, 89.2% generally felt they got enough information, but 47.5% still had questions. C282Y/C282Y homozygosity with normal TS/SF predicted the best understanding of genetic results. Many with no mutations thought relatives were at risk. Iron levels created most confusion, and a third incorrectly recalled treatment recommendations. Having any abnormal result, lower education, older age, and being non-white, and/or non-English speaking predicted lower understanding. CONCLUSIONS: Combining genotypic and phenotypic screening for HH/IO creates additional difficulties in communicating results-particularly to those with low health literacy. Explaining aberrant iron TS and SF levels and low-risk genotypes, follow-up recommendations, and risk to relatives will need creative, culturally appropriate strategies.


Assuntos
Etnicidade , Testes Genéticos , Hemocromatose/diagnóstico , Ferro/metabolismo , Idioma , Educação de Pacientes como Assunto , Adulto , Aconselhamento , Genótipo , Hemocromatose/etnologia , Hemocromatose/genética , Humanos , Fenótipo
6.
Int J Intercult Relat ; 31(5): 561-573, 2007 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-18037976

RESUMO

OBJECTIVES: The U.S. Office of Management and Budget (OMB) guidelines for collecting and reporting race and ethnicity information recently divided the "Asian or Pacific Islander" category into "Asian" and "Native Hawaiian or Other Pacific Islander". The OMB's decision to disaggregate the "Asian or Pacific Islander" category was the first step toward providing these communities with information to better serve their needs. However, whether individuals who formerly made up the combined group categorize themselves as the new guidelines intend is a question analyzed in this report. METHODS: A subset of adults participating in the Hemochromatosis and Iron Overload Screening Study completed both the OMB-minimum and the expanded race and ethnicity measure used in the National Health Interview Survey. We compared responses on the expanded measure contained within the OMB "Asian" definition (Filipino, Korean, Vietnamese, Japanese, Asian Indian, Chinese, and/or Other Asian) to "Asian" responses on the OMB-minimum measure. RESULTS: Mixed heritage Asians less often marked "Asian". Among mixed heritage Japanese, Chinese, and Filipinos, 27%, 49%, and 52% did not mark "Asian" on the OMB measure, respectively. Eleven percent of single-heritage Filipinos did not mark "Asian." CONCLUSIONS: Many individuals formerly making up the combined "Asian or Pacific Islander" group do not categorize themselves as the revised OMB guidelines intend. This is particularly evident among Filipinos and among Asians of mixed heritage. This research illuminates the reliability and utility of the broad "Asian" category and points to possible consequences of collapsing groups into a single category, i.e., missed information and/or erroneous generalization.

7.
Ethn Dis ; 16(4): 815-21, 2006.
Artigo em Inglês | MEDLINE | ID: mdl-17061732

RESUMO

OBJECTIVE: To assess geographic differences in the frequencies of HFE C282Y and H63D genotypes in six racial/ethnic groups recruited in the Hemochromatosis and Iron Overload Screening (HEIRS) Study. DESIGN: HFE C282Y and H63D genotypes of 97,551 participants, ages > or = 25 years, who reported that they belonged to one of six racial/ethnic groups, were analyzed. HFE genotype frequencies were compared among the racial/ethnic groups and among the HEIRS Study field centers within each racial/ethnic group. RESULTS: The distribution of HFE C282Y and H63D genotypes differed among racial/ethnic groups (P<.0001) and among field centers in Hispanics, Asians, Whites, and Blacks (each P<.05). Genotype frequencies were similar among field centers in Native Americans and Pacific Islanders. Frequencies of C282Y and H63D genotypes were greatest in Whites. The lowest frequencies of C282Y genotypes were observed in Asians; Blacks had the lowest H63D genotype frequencies and the highest frequency of the wild-type genotype. Among racial/ethnic groups, Hispanics had the greatest variation in HFE genotypes across geographic regions. CONCLUSION: HFE C282Y and H63D genotype frequencies vary significantly between racial/ethnic groups and within some racial/ethnic groups across geographic regions.


Assuntos
Etnicidade/genética , Hemocromatose/epidemiologia , Hemocromatose/genética , Antígenos de Histocompatibilidade Classe I/genética , Sobrecarga de Ferro/epidemiologia , Sobrecarga de Ferro/genética , Proteínas de Membrana/genética , Mutação , Grupos Raciais/genética , Adulto , Povo Asiático/genética , Povo Asiático/estatística & dados numéricos , População Negra/genética , População Negra/estatística & dados numéricos , Feminino , Frequência do Gene , Predisposição Genética para Doença , Testes Genéticos , Genótipo , Hemocromatose/etnologia , Proteína da Hemocromatose , Hispânico ou Latino/genética , Hispânico ou Latino/estatística & dados numéricos , Humanos , Indígenas Norte-Americanos/genética , Indígenas Norte-Americanos/estatística & dados numéricos , Sobrecarga de Ferro/etnologia , Masculino , Havaiano Nativo ou Outro Ilhéu do Pacífico/genética , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , América do Norte/epidemiologia , População Branca/genética , População Branca/estatística & dados numéricos
8.
Soc Sci Med ; 60(7): 1603-12, 2005 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-15652691

RESUMO

The rapid globalization of the world economy has increased the need for an astute understanding of cultural differences in perceptions, values, and ways of thinking about new food technologies. In this paper, we describe how socio-psychological and cultural factors may affect public perceptions of the risk of genetically modified (GM) food. We present psychological, sociological, and anthropological research on risk perception as a framework for understanding cross-national differences in reactions to GM food. Differences in the cultural values and circumstances of people in the US, European countries, and the developing world are examined. The implications of cultural theory for risk communication and decision making about GM food are discussed and directions for future research highlighted.


Assuntos
Características Culturais , Alimentos Geneticamente Modificados/efeitos adversos , Opinião Pública , Medição de Risco , Percepção Social , Países em Desenvolvimento , Europa (Continente) , Tecnologia de Alimentos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Internacionalidade
9.
Am J Manag Care ; 11(7): 413-21, 2005 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-16044978

RESUMO

OBJECTIVE: To assess barriers to physician participation in cancer clinical trials among oncologists, oncology leaders, and health plan leaders. STUDY DESIGN: Mail survey of 221 oncologists combined with semistructured telephone interviews with oncology and plan leaders at 10 integrated healthcare systems. METHODS: The survey instrument examined physicians' involvement in clinical trials; their perception of the value of trials to them, their patients, and their organization; and the presence of infrastructure support for trials and associated resource constraints. The interviews investigated similar issues from the leaders' perspective. We used linear regression to model trial enrollment and standard qualitative techniques to analyze the interviews. RESULTS: Oncologists estimated they enrolled 7% of patients in trials. They expressed extremely favorable attitudes toward trials as a source of high-quality patient care and a benefit to themselves professionally. While positive attitudes toward trials were common, and were significant bivariate predictors of enrollment, organizational factors were the predominant predictors in multivariate analysis. The best combination of factors independently predicting enrollment related to organizational support for trials, subspecialty of the oncologist, and limitations of trial eligibility requirements. CONCLUSIONS: To increase trial participation, there is a critical need for infrastructure to support trials, especially additional support staff and research nurses. In addition, there is a need for better intra-organizational communication and consideration of the impact of trial design on internal health plan resources. This research supports the need to continue a national dialogue about the broadly defined benefits and costs of clinical trials to patients, physicians, and health plans.


Assuntos
Atitude do Pessoal de Saúde , Ensaios Clínicos como Assunto , Neoplasias/terapia , Médicos/psicologia , Adulto , Coleta de Dados , Feminino , Humanos , Masculino , Oncologia , Pessoa de Meia-Idade , Estados Unidos
10.
Psychol Assess ; 14(4): 439-50, 2002 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-12501569

RESUMO

Quality of life (QOL) is increasingly assessed in cancer patients. In this article, the authors examined the psychometric performance of a commonly used QOL questionnaire, the Quality of Life Questionnaire--Cancer 30 (QLQ-C30; N. K. Aaronson et al., 1993), in multiethnic cancer patients. Content validation studies in patients and clinicians identified possible new items. Multiple-group confirmatory factor analysis supported equivalent structure across ethnic groups (Caucasians and Asian/Pacific Islanders [APIs]). A higher order QOL factor appeared to directly affect functioning scales and symptom count. Exploratory factor analysis examined effects of new items. Ten factors were extracted, 6 consistent with the original instrument and 4 reflecting potentially new aspects of QOL: Positive Social Support, Coping, Existential Well-Being, and Sexuality/Intimacy. The QLQ-C30 appears appropriate for use in API cancer patients. Further work needs to ensure that it includes all important domains.


Assuntos
Diversidade Cultural , Neoplasias/psicologia , Qualidade de Vida , Idoso , Humanos , Projetos Piloto , Inquéritos e Questionários
11.
Genet Med ; 8(11): 681-7, 2006 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-17108759

RESUMO

PURPOSE: Assess the quality of life impact of receiving indeterminate test results for hemochromatosis, a disorder involving HFE genetic mutations and/or elevated serum transferrin saturation and ferritin. METHODS: The study sample was from the Hemochromatosis and Iron Overload Screening Study, a large observational study of hemochromatosis among primary care patients in the US and Canada using HFE genotype and serum transferrin saturation and ferritin screening. Study subjects included 2,304 patients found with hemochromatosis risk of uncertain clinical significance. Assessed was SF-36 general health and emotional well-being before screening and six weeks after participants received their test results. Health worries were assessed after screening. RESULTS: Of the study subjects, 1,268 participants (51.5%) completed both assessments. Compared to normal controls, those with HFE mutations or elevated serum transferrin saturation and ferritin levels of uncertain significance were more likely to report diminished general health and mental well-being, and more health worries. These effects were associated with participants' belief of having tested positive for hemochromatosis or iron overload. CONCLUSION: Notification of indeterminate results from screening may be associated with mild negative effects on well-being, and might be a potential participant risk in screening programs for disorders with uncertain genotype-phenotype.


Assuntos
Atitude Frente a Saúde , Testes Genéticos/psicologia , Hemocromatose/genética , Sobrecarga de Ferro/diagnóstico , Adulto , Idoso , Etnicidade , Feminino , Hemocromatose/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Mutação , Qualidade de Vida , Classe Social
12.
Pac Health Dialog ; 11(2): 191-8, 2004 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-16281698

RESUMO

This report examined ethnic identity in 367 recently diagnosed cancer patients in Hawai'i's primary ethnic groups: Japanese, Hawaiians, Europeans, and Filipinos. The study assessed ethnic self-identify; definitions of and participation in different ethnic lifestyles; and relationships between measures of ethnic self-identity, lifestyle, and other indicators of ethnic and cultural affiliations. Results indicated that medical record-based ethnic indicators were well linked to individual self-reports of family pedigree. Self-descriptors included non-standard terms such as "American" and "Local," and respondents reported following between five and six different ethnically-associated ways of life. Multivariate analysis indicated that ethnic self-identity made a unique contribution that went beyond standard ethnic and acculturative markers in explaining lifestyles. This study provides strong support for multiculturalism in this ethnically heterogeneous population.


Assuntos
Diversidade Cultural , Estilo de Vida/etnologia , Neoplasias/etnologia , Autoimagem , Identificação Social , Asiático/psicologia , Feminino , Havaí , Humanos , Masculino , Prontuários Médicos/classificação , Pessoa de Meia-Idade , Análise Multivariada , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , População Branca/psicologia
13.
Psychooncology ; 11(2): 103-13, 2002.
Artigo em Inglês | MEDLINE | ID: mdl-11921326

RESUMO

This study assessed quality of life (QOL) in recently diagnosed breast and prostate cancer patients of European American and Asian Pacific Islanders (specifically, individuals of Filipino, Japanese, and Native Hawaiian ancestry) to investigate whether QOL varied according to ethnicity and the relative importance of ethnicity as a predictor of QOL. Participants were identified through consecutive registrations on the Hawaii Tumor Registry, based on a diagnosis of breast or prostate cancer 4-6 months previously. QOL was measured by the QLQ-C30, a standardized questionnaire widely used in cancer patient populations. Two hundred and twenty-seven individuals participated (101 prostate and 126 breast cancer patients). QOL was similar across ethnic groups in most areas of QOL. However, differences were found in several areas, all in the direction of Filipino patients reporting worse outcomes. Hierarchical stepwise regressions supported the importance of ethnicity, controlling for clinical and demographic predictors. We conclude that additional research is needed to understand the relationship between ethnicity and QOL in cancer survivors.


Assuntos
Asiático/psicologia , Neoplasias da Mama/etnologia , Neoplasias da Próstata/etnologia , Qualidade de Vida , Sobreviventes/psicologia , População Branca/psicologia , Adaptação Psicológica , Adulto , Idoso , Neoplasias da Mama/psicologia , Comparação Transcultural , Diversidade Cultural , Feminino , Havaí , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/psicologia , Papel do Doente
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