John M. Quillin

Peer-to-Peer Communication, Cancer Prevention, and the Internet

Online communication among patients and consumers through support groups, discussion boards, and knowledge resources is becoming more common. In this article, the summary of a workgroup discussion, we discuss key methods through which such web-based peer-to-peer communication may affect health promotion and disease prevention behavior (exchanges of information, emotional and instrumental support, and establishment of group norms and models). We also discuss several theoretical models for studying online peer communication, including social theory, health communication models, and health behavior models. Although online peer communication about health and disease is very common, research evaluating effects on health behaviors, mediators, and outcomes is still relatively sparse. We suggest that future research in this field should include formative evaluation and studies of effects on mediators of behavior change, behaviors, and outcomes. It also will be important to examine spontaneously emerging peer communication efforts to see how they can be integrated with theory-based efforts initiated by researchers.

Gail model risk assessment and risk perceptions.

Patients can benefit from accessible breast cancer risk information. The Gail model is a well-known means of providing risk information to patients and for guiding clinical decisions. Risk presentation often includes 5-year and lifetime percent chances for a woman to develop breast cancer. How do women perceive their risks after Gail model risk assessment? This exploratory study used a randomized clinical trial design to address this question among women not previously selected for breast cancer risk. Results suggest a brief risk assessment intervention changes quantitative and comparative risk perceptions and improves accuracy. This study improves our understanding of risk perceptions by evaluating an intervention in a population not previously selected for high-risk status and measuring perceptions in a variety of formats.

The impact of family history of breast cancer and cancer death on women's mammography practices and beliefs

Purpose: To summarize the impact of a family history of breast cancer on mammography practices and beliefs.Method: Survey data concerning breast health practices and beliefs were utilized for a cross-sectional analysis. Participants were 899 racially diverse nonpregnant women 40 years and older without breast cancer. The impact of various aspects of cancer family history on mammography, perceived barriers to and benefits of screening, and perceived breast cancer risk was assessed.Results: More women with a first-degree relative with breast cancer reported a mammogram within the past year and rated their breast cancer risk higher. Death of a first-degree relative impacted the belief that breast cancer can be cured with early detection. Degree of relatedness of affected relative impacted mammography practice and risk perceptions.Conclusion: Family history of breast cancer impacted mammography adherence, beliefs about outcomes with early detection, and risk perceptions. Breast cancer death in a family may be a better predictor of beliefs about breast cancer detection and cure than family history of cancer alone. These findings have implications for how screening recommendations and risk information are communicated to patients with different familial cancer experiences.

College women's awareness and consumption of folic acid for the prevention of neural tube defects

Purpose: Awareness and consumption of folic acid in the context of neural tube defect prevention among college women were assessed.Methods: Subjects documented folic acid awareness and multivitamin consumption. Beliefs about folic acid before and after an educational intervention were characterized using the Health Belief Model (HBM) and the Fetal Health Locus of Control Scale (FHLCS).Results: Awareness of folic acid was not associated with multivitamin consumption. Belief variables were not associated with awareness or consumption of folic acid.Conclusion: This study does not support educational interventions based on the HBM or FHLCS to increase multivitamin consumption among college women.

Spiritual coping, family history, and perceived risk for breast cancer--can we make sense of it?

Differences in spiritual beliefs and practices could influence perceptions of the role of genetic risk factors on personal cancer risk. We explored spiritual coping and breast cancer risk perceptions among women with and without a reported family history of breast cancer. Analyses were conducted on data from 899 women in primary care clinics who did not have breast cancer. Structural equation modeling (SEM), linear, and logistic modeling tested an interaction of family history of breast cancer on the relationship between spiritual coping and risk perceptions. Overall analyses demonstrated an inverse relationship between spiritual coping and breast cancer risk perceptions and a modifying effect of family history. More frequent spiritual coping was associated with lower risk perceptions for women with positive family histories, but not for those with negative family histories. Results support further research in this area that could influence communication of risk information to cancer genetic counseling patients.

Genetics Assessment at the End of Life: Suggestions for Implementation in Clinic and Future Research

BACKGROUND Approximately 5%-10% of all cancers and cardiovascular diseases have a significant genetic component. Of the 15 most frequent admission diagnoses for palliative care, at least one third have a significant genetic component which is testable, informative, and potentially life saving to the survivors. Once the patient has died, the chance to test or bank DNA for common inherited conditions such as breast cancer, colon cancer, cardiovascular disease, etc., is gone. OBJECTIVE To determine the frequency of genetic conditions for commonly seen palliative care conditions, the availability of testing or DNA banking for future testing, and how genetics assessment is helpful. DESIGN A case illustration and review of the currently published evidence. RESULTS Genetic testing fits the accepted model of family-centered palliative care, is ethical, and may lead to life-saving interventions. Risk assessment tools and helpful websites are available. CONCLUSIONS While common genetic conditions should be recognized before end-of-life care, the palliative care health professional may be the only person to recognize the condition before death of the patient and loss of available DNA.

Exploring Hereditary Cancer Among Dying Cancer Patients—A Cross-Sectional Study of Hereditary Risk and Perceived Awareness of DNA Testing and Banking

Hereditary cancer assessment at the end of life is a relatively unexplored area, but it could be critical for surviving family members. This study explored the prevalence of hereditary cancer among dying cancer patients and assessed patients’ perceived awareness of DNA testing and/or banking in a public access hospital. Palliative care patients with cancer from a single institution (or their medical-decision-making surrogates for patients unable to answer for themselves) completed structured interviews. Information was collected through medical records review and structured interviews for 43 dying cancer patients. Information for 9 patients was collected from surrogates. Nine patients (21%, 95% CI = 8.8% to 33.1%) had strong genetic risk. Currently available genetic tests could have addressed this risk for several patients. None had previous genetic counseling, testing or DNA banking. Among strong-risk patients, about half of patients/surrogates had heard/read “almost nothing” about genetic testing (44%) and DNA banking (67%). Perceived genetic awareness was not associated with genetic risk, and neither were sociodemographic characteristics. The proportion of hereditary cancer may be at least as high in the palliative care population as in other clinical settings, but awareness and uptake among patients are low. These conditions are not being recognized upstream and families are losing valuable information.

Health care system approaches for cancer patient communication.

Cancer patient communication is always embedded in a complex background of inter-related parts, that is, a system. Cancer patients specifically are exposed to a health care system. Considering this context, this article summarizes the insights from a roundtable discussion involving behavioral medicine and oncology experts convened at the 2008 Annual Meeting of the Society of Behavioral Medicine as part of an annual preconference course entitled “Interpersonal Communication and Cancer Control: Emerging Themes.” In this article we summarize the communication-relevant components of health care systems, focusing on the macro level. Next, we review existing theoretical frameworks for systems-based communication, the unique aspects of “systems thinking,” and the emerging systems tools that can be integrated in cancer communication. Finally, we propose a research agenda for successful system approaches for patient-centered cancer communication.

Talking (or Not) About Family Health History in Families of Latino Young Adults

Although individuals recognize the importance of knowing their family’s health history for their own health, relatively few people (e.g., less than a third in one national survey) collect this type of information. This study examines the rates of family communication about family health history of cancer, and predictors of communication in a sample of English-speaking Latino young adults. A total of 224 Latino young adults completed a survey that included measures on family communication, cultural factors, religious commitment, and cancer worry. We found that few Latino young adults reported collecting information from their families for the purposes of creating a family health history (18%) or sharing information about hereditary cancer risk with family members (16%). In contrast, slightly more than half of the participants reported generally “talking with their mothers about their family’s health history of cancer.” Logistic regression results indicated that cancer worry (odds ratio [OR] = 2.31; 95% confidence interval [CI] = 1.08-4.93), being female (OR = 3.12; 95% CI = 1.02-8.08), and being older (OR = 1.33; 95% CI = 1.01-1.76) were associated with increased rates of collecting information from family members. In contrast, orientation to the Latino culture (OR = 2.81; 95% CI = 1.33-5.94) and religious commitment (OR = 1.54; 95% CI = 1.02-2.32) were associated with increased rates of giving cancer information. Results highlight the need for prevention programs to help further general discussions about a family’s history of cancer to more specific information related to family health history.

Physicians' Current Practices and Opportunities for DNA Banking of Dying Patients With Cancer

PURPOSE The availability of genetic tests for cancer susceptibility is increasing. Current tests, however, have limited clinical sensitivity. Even when clinically valid tests are available, the genetic counseling and informed consent process might not be feasible for dying patients with cancer. DNA banking preserves the opportunity for future research or clinical testing and may provide critical opportunities for surviving relatives. This study explored the current practices and potential for DNA banking for cancer susceptibility among oncologists specializing in palliative care. METHODS Palliative care oncologists actively providing clinical care for dying patients with cancer were recruited for an online survey. Descriptive statistics for DNA banking practices, perceived qualification to recommend banking, and potential predictors were assessed. RESULTS Data were collected from 49 physicians (37% recruitment rate). Eighty percent reported assessing at least some patients for genetic cancer susceptibility in the past 12 months. No participants reported banking DNA for patients in the past 12 months. Only 5% reported feeling at least somewhat qualified to order DNA banking. A Web-based risk assessment tool and genetic counselor on staff were perceived as the most helpful potential resources. CONCLUSION Despite its potential, DNA banking is not being used by palliative care oncologists.