Cancer Risk Assessment and Genetic Counseling in an Academic Medical Center: Consultands' Satisfaction, Knowledge, and Behavior in the First Year

In 1995, we formally established a multifaceted cancer genetics program of clinical services, research, and education at a general academic medical center. In the first year, 58 families, mostly physician referred, received cancer risk assessment and genetic counseling for a family and/or medical history of cancer. The primary reasons for seeking consultation were to determine their risk or their offspring's risk for developing certain cancers and to inquire about the availability of DNA testing for predisposition to breast, ovarian, or colon cancers. To assess the level of satisfaction with program services, 51 consultands (22% with a personal history of cancer) were interviewed independently by telephone 3–12 months after the session. One goal of the survey was to improve program service. Ninety percent of respondents reported that the consultation was worth their time and money. Forty-two percent stated that their anxiety related to their cancer risk had decreased following counseling and 56% indicated no change. Recall of exact numerical risk was poor and one-third could not remember hearing any risk estimate. More respondents would recommend the service to friends (90%) than to family members (75%). Overall, the service was positively received by the majority of patients.     

Nonlinearity in the Epidemiology of Complex Health and Disease Processes

Theoretical Medicine and Bioethics - The challenges posed by chronic illness have pointed out to epidemiologists the multifactorial complex nature of disease causality. This notion has been...     

Is the conflict model of decision making applicable to the decision to be screened for cervical cancer? A field study

The present study examined aspects of the conflict model of decision making (Janis and Mann, 1977) in the context of attending for a screening test for cervical cancer. In addition, the ability of decision coping styles as measured by Mann's (1982) Decision Making Questionnaire II (DMQ II) to predict screening status was examined. Three hundred and two women answered a questionnaire operationalizing the constructs in the conflict model about their beliefs and knowledge of cervical cancer and the Pap smear test. Four screening categories were identified: never screened, not screened in the last two years (overdue), screened in last two years and initiated the test, and screened in last two years and recruited to have the test. Differences in the decision processes of these groups were examined. Women who were overdue for their Pap test showed greater decisional conflict and were more likely to adopt a defensive avoidance coping pattern than those who had been screened in the last two years. Regression analyses exploring predictors of decisional stress and defensive avoidance for each group, except the never screen, showed that the model's suggested pathways were evidenced among the Overdue Group. Results failed to find any association between coping styles as measured by the DMQ II and screening status. Implications of these findings are discussed.     

Neuropsychological changes in children with cancer: The treatment of missing data in longitudinal studies

Researchers conducting longitudinal studies with children or adults are inevitably confronted with problems of attrition and missing data. Missing data in longitudinal studies is frequently handled by excluding from analyses those cases for whom data are incomplete. This approach to missing data is not optimal. On the one hand, if data are missing at random, then dropping incomplete cases ignores information collected on those cases that could be used to improve estimates of population parameters (e.g., means, variances, covariances, and growth rates) and improve the power of significance tests of statistical hypotheses. On the other hand, if data are not missing at random, then dropping incomplete cases leads to biased parameter estimates and hypothesis tests that may be internally and externally invalid. This study uses three years of follow-up data from a longitudinal investigation of neuropsychological outcomes of cancer in children to demonstrate the problems presented by missing data in repeated measures designs and some solutions. In evaluating potential biasing effects of attrition, the study extends previous research on neuropsychological outcomes in pediatric cancer by inclusion of patients whose disease had relapsed, and by comparison of surviving and nonsurviving patients. Although the data presented have specific relevance to the study of neuropsychological outcome in pediatric cancer, the problems of missing data and the solutions presented are relevant to a wide variety of diseases and conditions of interest to researchers in child and adult neuropsychology.     

Genes and family environment in familial clustering of cancer

Familial clustering of a disease is defined as the occurrence of the disease within some families in excess of what would be expected from the occurrence in the population. It has been demonstrated for several cancer types, ranging from rare cancers as the adenomatosis-coli-associated colon cancer or the Li-Fraumeni syndrome to more common cancers as breast cancer and colon cancer. Familial clustering, however, is merely an epidemiological pattern, and it does not tell whether genetic or environmental causes or both in combination are responsible for the familial clustering. Familial clustering may be due to genetic predisposition to the disease, but exposure to environmental factors — shared by members of some families, but not by members of other families — may also cause familial clustering and hence mimic genetic inheritance in the study of nuclear families. Based on assumptions regarding the individual steps in the biological process starting with exposure to carcinogens and ending with death from disseminated cancer we suggest that genetic and environmental factors may both be involved in most of these steps. The present paper focuses on research methodologies necessary to discriminate between the effect of genes and family environment in the development of cancer.     

ALTERING SHOPPERS' SUPERMARKET PURCHASES TO FIT NUTRITIONAL GUIDELINES: AN INTERACTIVE INFORMATION SYSTEM

This study reports the results of one effort to help supermarket shoppers alter food purchases to make purchases (and meals) that are lower in fat and higher in fiber. A prototype interactive information system using instructional video programs, feedback on purchases with specific goals for change, weekly programs, and the ability to track user interactions and intended purchases was evaluated. The major dependent measure was users' actual food purchases as derived from participants' highly detailed supermarket receipts. After a 5- to 7-week baseline phase, participants were randomly assigned to an experimental or control condition for the 7- to 8-week intervention phase. A follow-up phase began 5 to 8 weeks after participants completed the intervention and discontinued use of the system. The results indicated that experimental participants, when compared to control participants, decreased high fat purchases and increased high fiber purchases during intervention, with evidence for some maintenance of effect in follow-up. Plans for increasing the use and impact of the system are discussed.     

Evaluation of a peer support program for women with breast cancer—lessons for practitioners

The present study aimed to describe how a volunteer peer support service assists women with breast cancer, and provides guidelines for practitioners in the development and implementation of such programmes. A two‐phase evaluation of a breast cancer peer support program was undertaken to describe important attributes of the peer support intervention, the impact of the volunteer visit on women's self‐reports of anxiety, and key indicators of a successful volunteer visit. Phase 1 included focus groups with 57 women previously treated for breast cancer. Phase 2 included a survey of 245 women also treated previously for breast cancer and visited by a Breast Cancer Support Volunteer. The key aspect of the peer support process was the bond of common experience leading to a decrease in social isolation, an increase in optimism about the future and reassurance about personal reactions and femininity. It is recommended that peer support programmes should aim to time support visits to coincide with the time when patient support needs are highest, that volunteers need to be recruited from a range of backgrounds and matched to patients most similar to them in way of life, and that peer support services should be embedded in a broad network of community support services. Copyright © 1999 John Wiley & Sons, Ltd.     

Psychometric properties of the Connor-Davidson Resilience Scale in women with breast cancer

Background/Objective:The aim was to analyse the psychometric properties of the 10-item version of the Connor-Davidson Resilience Scale (CD-RISC 10©) in breast cancer patients. Method: A sample of 169 Spanish women who had undergone surgery for breast cancer completed the CD-RISC 10©, along with questionnaires assessing life satisfaction, emotional intelligence, self-esteem, and positive and negative affect. Results: Confirmatory Factor Analysis supported a single-factor structure with adequate fit indices. Reliability was analysed by calculating McDonald’s omega coefficient, which yielded a value of .83. Validity evidence based on relationships with other variables was provided by positive and significant correlations between scores on the CD-RISC 10© and scores on emotional intelligence (clarity and repair), life satisfaction, self-esteem and positive affect, and by a negative and significant correlation with negative affect. The majority of these correlations were above |.50|. Conclusions: The CD-RISC 10© has satisfactory psychometric properties and is a suitable tool for measuring resilience in patients with cancer. The instrument is quick and easy to apply and may be used in both clinical and research contexts.     

The Colored, Eco-Genetic Relationship Map (CEGRM): A Conceptual Approach and Tool for Genetic Counseling Research

The Colored Ecological and Genetic Relational Map (CEGRM) [pronounced see-gram] is a conceptual approach and tool for presenting information about family and nonkin relationships and stories about inherited diseases in a simple, understandable form. It combines information that can be derived from pedigrees, genograms, ecomaps, and social network analysis in a single, or series of, pictorial maps based on colors and shapes. The CEGRM is based on a social systems perspective, particularly emphasizing social exchange and resource theories. The CEGRM should be particularly useful in genetic counseling research with members of suspected cancer-risk families or families with other late-onset inherited diseases. A genetic counseling client comes with a social history and context as well as a genetic one. Client decision-making in terms of reproductive plans, therapeutic intervention, lifestyle behavior and sharing or withholding of genetic information frequently becomes enmeshed with preexisting psycho-social relationships among biological kin, affinal kin (in-laws) and fictive kin (friends who act as family). The CEGRM makes it easier to compare different types of social interactions between the client and his/her significant others and among family members on the same dimensions.     

人乳头瘤病毒与宫颈癌的关系及启示

分子流行病学明确表明某些特定型别的人乳头瘤病毒（HPV）感染是浸润性宫颈癌和宫颈上皮内病变的主要致病原因。在HPV与宫颈癌的关系研究中无时无刻不渗透着马克思主义哲学原理,从哲学的角度去思考将使我们更科学、更透彻地理解两者的关系。