Discordant Patient and Clinician Perspectives on the Potential Value of Genetic Services in Safety-Net Clinics.

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.

Screening for hemochromatosis and iron overload: satisfaction with results notification and understanding of mailed results in unaffected participants of the HEIRS study.

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.

Performance of the U.S. Office of Management and Budget's Revised Race and Ethnicity Categories in Asian Populations*.

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".

Results communication and patient education after screening for possible hemochromatosis and iron overload: experience from the HEIRS Study of a large ethnically and linguistically diverse group.

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.

Serum ferritin and transferrin saturation in Asians and Pacific Islanders.

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<.

Impact of hemochromatosis screening in patients with indeterminate results: the hemochromatosis and iron overload screening study.

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.

Geographic and racial/ethnic differences in HFE mutation frequencies in the Hemochromatosis and Iron Overload Screening (HEIRS) Study.

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.

Ethnic identities and lifestyles in a multi-ethnic cancer patient population.

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.

Organizational barriers to physician participation in cancer clinical trials.

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.

Hemochromatosis and iron-overload screening in a racially diverse population.

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.

Psychosocial and cultural factors affecting the perceived risk of genetically modified food: an overview of the literature.

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.

Assessment of quality of life in a multicultural cancer patient population.

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.

Ethnic differences in quality of life among early breast and prostate cancer survivors.

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.