Key Indexing Terms: RISK COMMUNICATION NUMERACY DRUG TOXICITY RHEUMATOID ARTHRITIS Personal, non-commercial use only

Effectively communicating the risk and benefits of available treatment alternatives is an essential component of medical care. This is particularly true regarding the treatment of rheumatoid arthritis (RA), where there are now multiple treatment options available, each with distinct risk profiles. Effective communication of risk is difficult, however, in part because of limitations associated with both the provision and interpretation of probabilistic information 1-8 . At the most basic level, there is little agreement on how to present risk information in clinical practice, with some investigators arguing for the use of verbal phrases such as "rare" or "frequent" and others advocating the use of quantitative estimates (e.g., proportions or percentages). Use of words is limited by the wide range of values that patients and physicians assign to verbal expressions of probability 12 . People with protected values believe that certain objects should be protected from any and all trade-offs with other values no matter how small the risk. For example, people with protected values for forest conservation believe that forests should be protected from loggers no matter how small the threat to the forest. Studies have shown that protected values often result from incorrect assumptions and may therefore lead to poor decision-making. To test our hypothesis, we examined whether using several strategies to facilitate risk-communication, patients alter their willingness to take medications as the risk of toxicity is substantially decreased, and whether increased willingness to accept the risk of toxicity varies depending on the specific AE. MATERIALS AND METHODS Patients. Consecutive patients with RA belonging to a community rheumatology practice serving New Haven, Connnecticut, and surrounding areas were asked to participate in a study examining the importance patients attach Risk Communication in Rheumatoid Arthritis LIANA FRAENKEL, SIDNEY BOGARDUS, JOHN CONCATO, and DAVID FELSON ABSTRACT. Objective. Some people believe that certain issues should be protected from all trade-offs. These issues are referred to as "protected values." We investigated whether some patients with rheumatoid arthritis (RA) treat the risk of adverse effects (AE) as "protected values," i.e., as unacceptable regardless of how small the risk. Methods. Patients with RA rated willingness to risk 17 different AE on a visual analog scale, where 0 = not willing under any circumstances and 100 = definitely willing. Participants then rated willingness to take medication as the risk of each AE was progressively decreased by 2 levels from its actual risk, using a 5 level scale ranging from 10 in 100 to 1 in 100,000. Results. Between 32% and 39% of participants were not more willing to accept a risk of AE causing reversible cosmetic changes (e.g., acne), between 35% and 47% were not more willing to accept a risk of AE causing reversible discomfort (e.g., rash), and between 41% and 45% were not more willing to accept a risk of AE causing potential irreversible damage (e.g., pneumonitis) as the probability of each of these AE was substantially decreased. Unwillingness to accept risk of toxicity was especially evident for cancer, where 66% of patients refused to accept a risk of cancer occurring in 1 in 100,000 persons. Conclusion. Among patients particularly concerned with the risk of drug toxicity, many remain unwilling to accept the risk of AE even when their probability is decreased to levels far below their actual risk. These results suggest that patients may treat particularly worrisome AE as protected values, which may lead to poor decision-making in clinical practice

Social Network Evolution during Long-term Migration: A comparison of three case studies in the South Wales region

Ten years after Poland joined the European Union (EU), a sizable number of the once considered short-term migrants that entered the United Kingdom (UK) post-2004 have remained. From the literature, it is known that when initially migrating, social networks, composed of family and friends, are used to facilitate migration. Later, migrants’ social networks may evolve to include local, non-ethnic members of the community. Through these networks, migrants may access new opportunities within the local economy. They also serve to socialise newcomers in the cultural modalities of life in the destination country. However, what if migrants’ social networks do not evolve or evolve in a limited manner? Is cultural integration still possible under these conditions? Using data collected from three case studies in the South Wales region –Cardiff, Merthyr Tydfil & Llanelli- from 2008-2012, the aim of this article is to compare Polish migrants’ social network usage, or lack thereof, over time. This comparison will be used to understand how these social networks can be catalysts and barriers for cultural integration. The findings point to the migrants’ varied use of their local social networks, which is dependent upon their language skill acquisition and their labour market mobility in the destination country

Validation of Melanoma Immune Profile (MIP), a Prognostic Immune Gene Prediction Score for Stage II–III Melanoma

Purpose: Biomarkers are needed to stratify patients with stage II–III melanoma for clinical trials of adjuvant therapy because, while immunotherapy is protective, it also confers the risk of severe toxicity. We previously defined and validated a 53-immune gene melanoma immune profile (MIP) predictive both of distant metastatic recurrence and of disease-specific survival (DSS). Here, we test MIP on a third independent population. Experimental Design: A retrospective cohort of 78 patients with stage II–III primary melanoma was analyzed using the NanoString assay to measure expression of 53 target genes, and MIP score was calculated. Statistical analysis correlating MIP with DSS, overall survival, distant metastatic recurrence, and distant metastasis-free interval was performed using ROC curves, Kaplan–Meier curves, and standard univariable and multivariable Cox proportional hazards models. Results: MIP significantly distinguished patients with distant metastatic recurrence from those without distant metastatic recurrence using ROC curve analysis (AUC = 0.695; P = 0.008). We defined high- and low-risk groups based on the cutoff defined by this ROC curve and find that MIP correlates with both DSS and overall survival by ROC curve analysis (AUC = 0.719; P = 0.004 and AUC = 0.698; P = 0.004, respectively). Univariable Cox regression reveals that a high-risk MIP score correlates with DSS (P = 0.015; HR = 3.2). Conclusions: MIP identifies patients with low risk of death from melanoma and may constitute a clinical tool to stratify patients with stage II–III melanoma for enrollment in clinical trials

Local Literature Bias in Genetic Epidemiology: An Empirical Evaluation of the Chinese Literature

BACKGROUND: Postulated epidemiological associations are subject to several biases. We evaluated whether the Chinese literature on human genome epidemiology may offer insights on the operation of selective reporting and language biases. METHODS AND FINDINGS: We targeted 13 gene-disease associations, each already assessed by meta-analyses, including at least 15 non-Chinese studies. We searched the Chinese Journal Full-Text Database for additional Chinese studies on the same topics. We identified 161 Chinese studies on 12 of these gene-disease associations; only 20 were PubMed-indexed (seven English full-text). Many studies (14–35 per topic) were available for six topics, covering diseases common in China. With one exception, the first Chinese study appeared with a time lag (2–21 y) after the first non-Chinese study on the topic. Chinese studies showed significantly more prominent genetic effects than non-Chinese studies, and 48% were statistically significant per se, despite their smaller sample size (median sample size 146 versus 268, p < 0.001). The largest genetic effects were often seen in PubMed-indexed Chinese studies (65% statistically significant per se). Non-Chinese studies of Asian-descent populations (27% significant per se) also tended to show somewhat more prominent genetic effects than studies of non-Asian descent (17% significant per se). CONCLUSION: Our data provide evidence for the interplay of selective reporting and language biases in human genome epidemiology. These biases may not be limited to the Chinese literature and point to the need for a global, transparent, comprehensive outlook in molecular population genetics and epidemiologic studies in general

Focus groups as a qualitative method for crosscultural research in social gerontology

The focus group approach for collecting qualitative data can be usefully applied in social gerontological studies, both in a single setting and cross-culturally. The experiences of the research terms participating in the Comparative Study of Asian Elderly in employing focus groups are described, and their advantages and disadvantages as a general method for gathering basic qualitative data are discussed. While the method has promise, it also should be recognized that conducting focus group research within the context of a comparative study compounds the considerable time, effort, and funds that focus group research for basic social science already requires.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/42971/1/10823_2004_Article_BF00972029.pd

Enhancing Consumer Attitude Toward Culturally Mixed Symbolic Products from Foreign Global Brands in an Emerging-Market Setting: The Role of Cultural Respect

The extant literature has not examined the conditions that govern integrative and exclusionary reactions to cultural hybrid products with sufficient detail. Within an emerging-market setting, this study explores how culturally mixed symbolic products (CMSPs) from foreign global brands can avoid antagonistic consumer attitudes. Building on social categorization theory, the authors argue that foreign global brands are viewed as belonging to an out-group and may thus encounter difficulties in tapping local cultural capital, resulting in a negative relationship between brand globalness and consumer attitude toward CMSPs. However, they contend that product category moderates this relationship such that there is a stronger negative effect for nonfood products than for food products. Moreover, the authors theorize that (1) cultural respect by foreign global companies directly enhances consumer attitudes toward CMSPs and (2) cultural respect attenuates the negative brand globalness–CMSP attitude link. These hypotheses are tested using a representative consumer sample from eight provinces/municipalities in China (n = 646). Results provide important implications for global companies on how to benefit from local cultural resources in their localization processes

Reporting of Human Genome Epidemiology (HuGE) association studies: An empirical assessment

<p>Abstract</p> <p>Background</p> <p>Several thousand human genome epidemiology association studies are published every year investigating the relationship between common genetic variants and diverse phenotypes. Transparent reporting of study methods and results allows readers to better assess the validity of study findings. Here, we document reporting practices of human genome epidemiology studies.</p> <p>Methods</p> <p>Articles were randomly selected from a continuously updated database of human genome epidemiology association studies to be representative of genetic epidemiology literature. The main analysis evaluated 315 articles published in 2001–2003. For a comparative update, we evaluated 28 more recent articles published in 2006, focusing on issues that were poorly reported in 2001–2003.</p> <p>Results</p> <p>During both time periods, most studies comprised relatively small study populations and examined one or more genetic variants within a single gene. Articles were inconsistent in reporting the data needed to assess selection bias and the methods used to minimize misclassification (of the genotype, outcome, and environmental exposure) or to identify population stratification. Statistical power, the use of unrelated study participants, and the use of replicate samples were reported more often in articles published during 2006 when compared with the earlier sample.</p> <p>Conclusion</p> <p>We conclude that many items needed to assess error and bias in human genome epidemiology association studies are not consistently reported. Although some improvements were seen over time, reporting guidelines and online supplemental material may help enhance the transparency of this literature.</p

Large-Scale Evidence for the Effect of the COLIA1 Sp1 Polymorphism on Osteoporosis Outcomes: The GENOMOS Study

BACKGROUND: Osteoporosis and fracture risk are considered to be under genetic control. Extensive work is being performed to identify the exact genetic variants that determine this risk. Previous work has suggested that a G/T polymorphism affecting an Sp1 binding site in the COLIA1 gene is a genetic marker for low bone mineral density (BMD) and osteoporotic fracture, but there have been no very-large-scale studies of COLIA1 alleles in relation to these phenotypes. METHODS AND FINDINGS: Here we evaluated the role of COLIA1 Sp1 alleles as a predictor of BMD and fracture in a multicenter study involving 20,786 individuals from several European countries. At the femoral neck, the average (95% confidence interval [CI]) BMD values were 25 mg/cm (2) (CI, 16 to 34 mg/cm (2)) lower in TT homozygotes than the other genotype groups ( p < 0.001), and a similar difference was observed at the lumbar spine; 21 mg/cm (2) (CI, 1 to 42 mg/cm (2)), ( p = 0.039). These associations were unaltered after adjustment for potential confounding factors. There was no association with fracture overall (odds ratio [OR] = 1.01 [CI, 0.95 to 1.08]) in either unadjusted or adjusted analyses, but there was a non-significant trend for association with vertebral fracture and a nominally significant association with incident vertebral fractures in females (OR = 1.33 [CI, 1.00 to 1.77]) that was independent of BMD, and unaltered in adjusted analyses. CONCLUSIONS: Allowing for the inevitable heterogeneity between participating teams, this study—which to our knowledge is the largest ever performed in the field of osteoporosis genetics for a single gene—demonstrates that the COLIA1 Sp1 polymorphism is associated with reduced BMD and could predispose to incident vertebral fractures in women, independent of BMD. The associations we observed were modest however, demonstrating the importance of conducting studies that are adequately powered to detect and quantify the effects of common genetic variants on complex diseases