A Metastasis or a Second Independent Cancer? Evaluating the Clonal Origin of Tumors Using Array-CGH Data

When a cancer patient develops a new tumor it is necessary to determine if this is a recurrence (metastasis) of the original cancer, or an entirely new occurrence of the disease. This is accomplished by assessing the histo-pathology of the lesions, and it is frequently relatively straightforward. However, there are many clinical scenarios in which this pathological diagnosis is difficult. Since each tumor is characterized by a genetic fingerprint of somatic mutations, a more definitive diagnosis is possible in principle in these difficult clinical scenarios by comparing the fingerprints. In this article we develop and evaluate a statistical strategy for this comparison when the data are derived from array comparative genomic hybridization, a technique designed to identify all of the somatic allelic gains and losses across the genome. Our method involves several stages. First a segmentation algorithm is used to estimate the regions of allelic gain and loss. Then the broad correlation in these patterns between the two tumors is assessed, leading to an initial likelihood ratio for the two diagnoses. This is then further refined by comparing in detail each plausibly clonal mutation within individual chromosome arms, and the results are aggregated to determine a final likelihood ratio. The method is employed to diagnose patients from several clinical scenarios, and the results show that in many cases a strong clonal signal emerges, occasionally contradicting the clinical diagnosis. The “quality” of the arrays can be summarized by a parameter that characterizes the clarity with which allelic changes are detected. Sensitivity analyses show that most of the diagnoses are robust when the data are of high quality

Challenges and Opportunities: What Can We Learn from Patients Living with Chronic Musculoskeletal Conditions, Health Professionals and Carers about the Concept of Health Literacy Using Qualitative Methods of Inquiry?

The field of health literacy continues to evolve and concern public health researchers and yet remains a largely overlooked concept elsewhere in the healthcare system. We conducted focus group discussions in England UK, about the concept of health literacy with older patients with chronic musculoskeletal conditions (mean age = 73.4 years), carers and health professionals. Our research posed methodological, intellectual and practical challenges. Gaps in conceptualisation and expectations were revealed, reiterating deficiencies in predominant models for understanding health literacy and methodological shortcomings of using focus groups in qualitative research for this topic. Building on this unique insight into what the concept of health literacy meant to participants, we present analysis of our findings on factors perceived to foster and inhibit health literacy and on the issue of responsibility in health literacy. Patients saw health literacy as a result of an inconsistent interactive process and the implications as wide ranging; healthcare professionals had more heterogeneous views. All focus group discussants agreed that health literacy most benefited from good inter-personal communication and partnership. By proposing a needs-based approach to health literacy we offer an alternative way of conceptualising health literacy to help improve the health of older people with chronic conditions

Disparities in Potentially Preventable Hospitalizations: Near-National Estimates for Hispanics

© Health Research and Educational Trust Objective: To obtain near-national rates of potentially preventable hospitalization (PPH)—a marker of barriers to outpatient care access—for Hispanics; to examine their differences from other race-ethnic groups and by Hispanic national origin; and to identify key mediating factors. Data Sources/Study Setting: Data from all-payer inpatient discharge databases for 15 states accounting for 85 percent of Hispanics nationally. Study Design: Combining counts of inpatient discharges with census population for adults aged 18 and older, we estimated age-sex-adjusted PPH rates. We examined county-level variation in race-ethnic disparities in these rates to identify the mediating role of area-level indicators of chronic condition prevalence, socioeconomic status (SES), health care access, acculturation, and provider availability. Principal Findings: Age-sex-adjusted PPH rates were 13 percent higher among Hispanics (1,375 per 100,000 adults) and 111 percent higher among blacks (2,578) compared to whites (1,221). Among Hispanics, these rates were relatively higher in areas with predominantly Puerto Rican and Cuban Americans than in areas with Hispanics of other nationalities. Small area variation in chronic condition prevalence and SES fully accounted for the higher rates among Hispanics, but only partially among blacks. Conclusions: Hispanics and blacks face higher barriers to outpatient care access; the higher barriers among Hispanics (but not blacks) seem mediated by SES, lack of insurance, cost barriers, and limited provider availability

‘Who is Helsinki?’ Sex workers advise improving communication for good participatory practice in clinical trials

After premature closures in 2004 of biomedical human immunodeficiency virus (HIV) prevention trials involving sex workers in Africa and Asia, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and Global Advocacy for HIV Prevention (AVAC) undertook consultations to establish better participatory guidelines for such trials in order to address ethical concerns. This study investigated sex workers’ knowledge and beliefs about research ethics and good participatory practices (GPP) and the perspectives of sex workers on research participation. A 33-question survey based on criteria identified by UNAIDS and AVAC was translated into three other languages. Participants were recruited through mailing lists and contacts with existing sex work networks. In total, 74 responses from Europe, the Americas and Asia were received. Thirty percent of respondents reported first-hand involvement in biomedical HIV prevention trials. Seventy percent indicated a lack of familiarity with codes of ethics for research. This paper focuses exclusively on communication issues described in survey responses. Communication was an important theme: the absence of clear communication between trial participants and investigators contributed to premature trial closures in at least two sites. Sex workers had recommendations for how researchers might implement GPP through improved communication, including consultation at the outset of planning, explaining procedures in non-technical terms and establishing clear channels for feedback from participants

Video decision support tool for advance care planning in dementia: randomised controlled trial

Objective To evaluate the effect of a video decision support tool on the preferences for future medical care in older people if they develop advanced dementia, and the stability of those preferences after six weeks

Validation of Self-Reported Health Literacy Questions Among Diverse English and Spanish-Speaking Populations

BackgroundLimited health literacy (HL) contributes to poor health outcomes and disparities, and direct measurement is often time-intensive. Self-reported HL questions have not been validated among Spanish-speaking and diverse English-speaking populations.ObjectiveTo evaluate three self-reported questions: 1 "How confident are you filling out medical forms?"; 2 "How often do you have problems learning about your medical condition because of difficulty understanding written information?"; and 3 "How often do you have someone help you read hospital materials?" Answers were based on a 5-point Likert scale.DesignThis was a validation study nested within a trial of diabetes self-management support in the San Francisco Department of Public Health.ParticipantsEnglish and Spanish-speaking adults with type 2 diabetes receiving primary care.MethodsUsing the Test of Functional Health Literacy in Adults (s-TOFHLA) in English and Spanish as the reference, we classified HL as inadequate, marginal, or adequate. We calculated the C-index and test characteristics of the three questions and summative scale compared to the s-TOFHLA and assessed variations in performance by language, race/ethnicity, age, and education.Key resultsOf 296 participants, 48% were Spanish-speaking; 9% were White, non-Hispanic; 47% had inadequate HL and 12% had marginal HL. Overall, 57% reported being confident with forms "somewhat" or less. The "confident with forms" question performed best for detecting inadequate (C-index = 0.82, (0.77-0.87)) and inadequate plus marginal HL (C index = 0.81, (0.76-0.86); p<0.01 for differences from other questions), and performed comparably to the summative scale. The "confident with forms" question and scale also performed best across language, race/ethnicity, educational attainment, and age.ConclusionsA single self-reported HL question about confidence with forms and a summative scale of three questions discriminated between Spanish and English speakers with adequate HL and those with inadequate and/or inadequate plus marginal HL. The "confident with forms" question or the summative scale may be useful for estimating HL in clinical research involving Spanish-speaking and English-speaking, chronically-ill, diverse populations