Katherine Clegg Smith

The Angelina effect: immediate reach, grasp, and impact of going public

Background:In May 2013, Angelina Jolie revealed in a New York Times opinion piece that she had undergone a preventive double mastectomy because she had a family history of cancer and carried a rare mutation of the BRCA1 gene. Media coverage has been extensive, but it is not obvious what messages the public took from this personal health story.Methods:We conducted a survey with a representative national online panel of 2,572 adults. Participants described their awareness and identified information sources for the Angelina Jolie news story. They also reported their understanding, reactions, perceptions, and subsequent activities related to the story. We asked questions pertaining to personal and societal breast cancer risk and hypothetical questions regarding preventive surgery if the respondent or a family member were in the same position as Ms Jolie. Demographic information was collected, as was family risk for breast and ovarian cancer, and a gauge of numeracy.Results:While three of four Americans were aware of Angelina Jolie’s double mastectomy, fewer than 10% of respondents had the information necessary to accurately interpret Ms Jolie’s risk of developing cancer relative to a woman unaffected by the BRCA gene mutation. Awareness of the Angelina Jolie story was not associated with improved understanding.Conclusion:While celebrities can bring heightened awareness to health issues, there is a need for these messages to be accompanied by more purposeful communication efforts to assist the public in understanding and using the complex diagnostic and treatment information that these stories convey.Genet Med 16 7, 516–521.

Best practices in mixed methods for quality of life research.

There is a growing priority in all areas of health research to develop new methodologies to improve the quality and scientific power of data, and this is leading to an extraordinary surge in methodological diversity. This diversity reflects the nature of the problems facing health sciences and health care delivery, such as disparities among populations, age groups, ethnicities, and cultures; poor adherence to recommended treatments; behavioral risk factors contributing to disability and health; and the translation of research findings into applied settings. The diversity in methodology also signals a growing acceptance of behavioral and social science perspectives in clinical research, the formation of interdisciplinary research teams, and use of multi-faceted approaches. Such approaches are important to investigations of complex health problems, which call for incorporating patient and family point of view, and cultural models of illness and health. Contributing to this interest in methodological development has been the increased methodological sophistication of mixed methods research, and practices related to combining quantitative and qualitative research. Researchers are using approaches such as in-depth interviews, field observations, and patient records to understand individual experiences, participant involvement in interventions, and barriers to and facilitators of treatment. These qualitative approaches are often combined with data from clinical trials, surveys of attitudes and beliefs, economic or medical data to better understand health problems [1]. Evidence in the published literature attests to the current use of mixed methods approaches in health-related research, from cardiology [2], pharmacy [3], family medicine [4], pediatric oncology nursing [5], mental health [6, 7], disabilities [8] and nutrition [9], in both clinical settings [10] and in the social context of daily activities and relationships [11]. Scientists and clinicians working in the area of quality of life broadly, and more specifically in health outcomes assessment, have found mixed methods to be increasingly important for both theoretical and methodological reasons. Quality of life researchers often examine questions that have multiple epistemological, scientific, and clinical foci and are faced with integrating diverse perspectives, types of evidence, and audiences or stakeholders. Data may range from biological data from a patient’s clinical record, to health care delivery indicators and costs, to household and community-level outcomes such as loss of productivity, and regional or national policies. The journal Quality of Life Research has a long-standing commitment to publishing high-quality research that brings both qualitative A. C. Klassen (&) Drexel University School of Public Health, Philadelphia, PA, USA e-mail: ack57@drexel.edu

Phase II Study of Extended-Dose Temozolomide in Patients With Melanoma

PURPOSE We conducted a phase II trial of extended-dose temozolomide (TMZ) in patients with melanoma to test the hypothesis that the approximately 30% response rate observed in patients treated with extended-dose TMZ with antiangiogenic agents was caused by TMZ alone. We hypothesized that expression of methylguanine methyltransferase (MGMT) in the tumor would correlate with drug resistance to TMZ. PATIENTS AND METHODS Patients with stage IV or unresectable stage III melanoma were treated with TMZ 75 mg/m(2)/d for 6 weeks followed by a 2-week rest period. Cycles were repeated until progression. Patients were stratified by M1c disease or not. The primary end point was objective response proportion. MGMT expression was assessed by methylation-specific pyrosequencing of the promoter and by immunohistochemistry. RESULTS Forty-nine patients (25 with M1c disease) were assessable. Three patients (12.5%) in each cohort experienced partial responses; there were no complete responses. Ten patients (21%) had stable disease lasting more than 24 weeks. Median time to progression was 3.3 months. Median survival was 10.1 months; survival was similar in the two cohorts. The estimated 18-month survival was 27%. There was no correlation between response and either immunohistochemistry staining for MGMT or for MGMT promoter methylation. Seventy-five percent of patients developed CD4(+) lymphopenia after three cycles. CONCLUSION Extended-dose TMZ therapy did not result in a 30% responses rate, which has been observed using extended-dose TMZ with antiangiogenic agents. Response did not correlate with MGMT expression or promoter methylation as a continuous variable, suggesting that other resistance mechanisms are important.

“I Always Felt I Had to Prove My Manhood”: Homosexuality, Masculinity, Gender Role Strain, and HIV Risk Among Young Black Men Who Have Sex With Men

Objectives. We explored gender role strain (GRS) arising from conflict between homosexuality and cultural conceptions of masculinity among young Black men who have sex with men (MSM). Methods. We conducted a categorical analysis (a qualitative, 3-stage, iterative analysis) of data from studies conducted in 2001 to 2006, which interviewed 35 men aged 18 to 24 years in 3 New York cities and Atlanta, Georgia. Results. Participants described rigid, often antihomosexual expectations of masculinity from their families, peers, and communities. Consistent with GRS, this conflict and pressure to conform to these expectations despite their homosexuality led to psychological distress, efforts to camouflage their homosexuality, and strategies to prove their masculinity. Participants believed this conflict and the associated experience of GRS might increase HIV risk through social isolation, poor self-esteem, reduced access to HIV prevention messages, and limited parental-family involvement in sexuality development and early sexual decision-making. Conclusions. Antihomosexual expectations of masculinity isolate young Black MSM during a developmental stage when interpersonal attachments are critical. GRS may influence sexual risk behavior and HIV risk and be an important target for HIV prevention.

Media Advocacy and Newspaper Coverage of Tobacco Issues: A Comparative Analysis of 1 year's Print News in the United States and Australia

Tobacco control advocates now recognize the value of influencing news coverage of tobacco; news coverage influences attitudes and behavior as well as policy progression. It is, however, difficult to assess the progress of such efforts within a single national and temporal context. Our data represent the first systematic international comparison of press coverage of tobacco issues. Tobacco articles from major daily newspapers in Australia (12 newspapers; 1,188 articles) and the United States (30 newspapers; 1,317 articles) were collected over 1 year (2001). The analysis shows that coverage in the two countries was similarly apportioned between hard news (>70%) and opinion pieces. Similarly, stories in both countries were most likely to recount positive events. The substantive focus of coverage, however, differed, as did the expression of hostile opinion toward tobacco control efforts (United States, 4%; Australia, 7.1%). Although secondhand smoke and education, cessation, and prevention efforts were covered widely in both settings, these topics dominated coverage in Australia (29.2%) more than in the United States (17.6%), where a more diffuse set of tobacco topics gained relative prominence. The difference in policy conditions seems to offer contrasting opportunities for advocates in the two countries to use newspapers to promote helpful tobacco control messages for both behavior and policy change.

Patient safety incident reporting: a qualitative study of thoughts and perceptions of experts 15 years after ‘To Err is Human’

One of the key recommendations of the Institute of Medicines (IOM) report, To Err is Human, 15 years ago was for greater attention to incident reporting in healthcare, analogous to the role it has played in aviation and other high-risk industries. With the passage of time and maturation of the patient safety field, we conducted semistructured interviews with 11 international patient safety experts with knowledge of the US healthcare and meeting at least one of the following criteria: (1) involved in the development of the IOMs recommendations, (2) responsible for the design and/or implementation of national or regional incident reporting systems, (3) conducted research on patient safety/incident reporting at a national level. Five key challenges emerged to explain why incident reporting has not reached its potential: poor processing of incident reports (triaging, analysis, recommendations), inadequate engagement of doctors, insufficient subsequent visible action, inadequate funding and institutional support of incident reporting systems and inadequate usage of evolving health information technology. Leading patient safety experts acknowledge the current challenges of incident reports. The future of incident reporting lies in targeted incident reporting, effective triaging and robust analysis of the incident reports and meaningful engagement of doctors. Incident reporting must be coupled with visible, sustainable action and linkage of incident reports to the electronic health record. If the healthcare industry wants to learn from its mistakes, miss or near miss events, it will need to take incident reporting as seriously as the health budget.

Something fishy? News media presentation of complex health issues related to fish consumption guidelines.

OBJECTIVE The news media are an important source of dietary information. Understanding news content, particularly the portrayal of risks and benefits of certain foods, is relevant for effective public health communication. Fish consumption may reduce risk for CVD and aid neonatal development, but recent work shows public confusion about the benefits of fish, challenged by the evidence of mercury and other contaminants in fish. We present an analysis of the messages about fish in US news media over 15 years, identifying trends in coverage and highlighting implications of current messaging. DESIGN We conducted a descriptive text analysis and coded for manifest content: locality of focus, story frame, reference to studies, inclusion of government guidelines and portrayal of uncertainty. We identified chronological patterns and analysed the data for statistically significant relationships between media source and content. SETTING News stories were selected from five daily newspapers and five television networks (1993-2007). SUBJECTS We analysed 310 health-related news stories on fish. RESULTS Risk messages outweighed benefit messages four to one, and health benefits only became prominent after 2002. No difference existed in coverage topic by news source. Fish consumption has increasingly become a national issue. CONCLUSIONS With the bulk of messages about fish consumption focused on risk, the benefits may be lost to consumers. This gap creates a need for public health to work with news media to more effectively communicate benefits and risks around fish consumption and health and to consider options for communicating tailored information where it can be more readily utilised.

Australian Letters to the Editor on Tobacco: Triggers, Rhetoric, and Claims of Legitimate Voice

News coverage of tobacco issues influences both individual behavior change and policy progression. Thus, media advocacy is increasingly recognized as important for promoting public health. Letters to the editor (LTE) are a basic form of media advocacy, serving to demonstrate community sentiment on a given issue. Such letters are yet to receive systematic analytic consideration. The authors conducted an ethnographic content analysis of LTE on tobacco issues from a sample of 11 Australian daily newspapers over a 3-year period (2001 to 2003, N = 361). They argue that letters are artifacts of active engagement in a public debate and note that various stakeholders adopt similar strategies to pursue their objectives. They illustrate how identifying personal and collective identities is crucial in the assertion of legitimacy of voice in LTEs. Better understanding is needed of both the particular issues that spark public engagement, and the salient rhetoric employed by advocates of disparate positions.

A Letter of Consequence: Referral Letters From General Practitioners to Secondary Mental Health Services

The referral letter is a key instrument in moving patients from primary to secondary care services. Consequently, the circumstances in which a referral should be made and its contents have been the subject of clinical guidelines. This article is based on a project that demonstrated that physicians do not adhere to clinical guidelines when referring patients to secondary mental health services. This research supports earlier findings into noncompliance with guidelines by general practitioners (GPs). The authors briefly note possible reasons, which have been the subject of some debate. They also present a content analysis of referral letters to demonstrate the important ways in which they differ from guideline criteria. However, their central argument is that the role of the referral letter in relation to the GP’s repertoire of treatments has not been understood fully. Such understanding implies the need for a reexamination of the support available for GPs.

Regulating alcohol advertising: Content analysis of the adequacy of federal and self-regulation of magazine advertisements, 2008-2010

OBJECTIVES We analyzed beer, spirits, and alcopop magazine advertisements to determine adherence to federal and voluntary advertising standards. We assessed the efficacy of these standards in curtailing potentially damaging content and protecting public health. METHODS We obtained data from a content analysis of a census of 1795 unique advertising creatives for beer, spirits, and alcopops placed in nationally available magazines between 2008 and 2010. We coded creatives for manifest content and adherence to federal regulations and industry codes. RESULTS Advertisements largely adhered to existing regulations and codes. We assessed only 23 ads as noncompliant with federal regulations and 38 with industry codes. Content consistent with the codes was, however, often culturally positive in terms of aspirational depictions. In addition, creatives included degrading and sexualized images, promoted risky behavior, and made health claims associated with low-calorie content. CONCLUSIONS Existing codes and regulations are largely followed regarding content but do not adequately protect against content that promotes unhealthy and irresponsible consumption and degrades potentially vulnerable populations in its depictions. Our findings suggest further limitations and enhanced federal oversight may be necessary to protect public health.