Predictors of decision making in families at risk for inherited breast/ovarian cancer.

Mellon, Suzanne; Janisse, James; Gold, Robin; Cichon, Michelle; Berry-Bobovski, Lisa; Tainsky, Michael A.; Simon, Michael S.

doi:10.1037/a0012714

Cited by 20 publications

(31 citation statements)

References 51 publications

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“…Personal and family history of disease, the quality of self-perceived health, and the regularity with which people visit a doctor were all predictors of various actions taken in response to test results. This finding supports previous observations that personal context can influence interpretation of cancer risk figures and subsequent decision making (Croyle and Lerman 1999;Sivell et al 2008;Mellon et al 2009). To address the potential importance of customers' personal situations on their interpretations of risk, DTC companies may wish to consider models of risk reporting such as the one adopted by the Coriell Personalized Medicine Collective (CPMC 2011), in which genetic risk information is augmented with risks from family history, behaviors, and co-morbidities, when such risks are known.…”

Section: Discussionsupporting

confidence: 92%

Risky Business: Risk Perception and the Use of Medical Services among Customers of DTC Personal Genetic Testing

Kaufman

Bollinger

Dvoskin

et al. 2012

Journal of Genetic Counseling

154

180

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Direct-to-consumer genetic testing has generated speculation about how customers will interpret results and how these interpretations will influence healthcare use and behavior; however, few empirical data on these topics exist. We conducted an online survey of DTC customers of 23andMe, deCODEme, and Navigenics to begin to address these questions. Random samples of U.S. DTC customers were invited to participate. Survey topics included demographics, perceptions of two sample DTC results, and health behaviors following DTC testing. Of 3,167 DTC customers invited, 33% (n = 1,048) completed the survey. Forty-three percent of respondents had sought additional information about a health condition tested; 28% had discussed their results with a healthcare professional; and 9% had followed up with additional lab tests. Sixteen percent of respondents had changed a medication or supplement regimen, and one-third said they were being more careful about their diet. Many of these health-related behaviors were significantly associated with responses to a question that asked how participants would perceive their colon cancer risk (as low, moderate, or high) if they received a test result showing an 11% lifetime risk, as compared to 5% risk in the general population. Respondents who would consider themselves to be at high risk for colon cancer were significantly more likely to have sought information about a disease (p = 0.03), discussed results with a physician (p = 0.05), changed their diet (p = 0.02), and started exercising more (p = 0.01). Participants' personal health contexts--including personal and family history of disease and quality of self-perceived health--were also associated with health-related behaviors after testing. Subjective interpretations of genetic risk data and personal context appear to be related to health behaviors among DTC customers. Sharing DTC test results with healthcare professionals may add perceived utility to the tests.

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Section: Discussionsupporting

confidence: 92%

Risky Business: Risk Perception and the Use of Medical Services among Customers of DTC Personal Genetic Testing

Kaufman

Bollinger

Dvoskin

et al. 2012

Journal of Genetic Counseling

154

180

View full text Add to dashboard Cite

show abstract

“…The majority of the studies that looked at decision making show that monitoring is positively related to intentions to undergo optional medical tests and procedures ( N =5; Beckendorf et al, 1997; Cowan, Meiser, Giles, Lindeman, & Gaff et al, 2008; Culler et al, 2002; Fang, Miller, Daly, & Hurley, 2002; Mellon et al, 2009 vs. N =2; Gaff, Cowan, Meiser, & Lindeman, 2006; Weinberg et al, 2009) (Table 2). Two of these papers are based on the same study but report somewhat inconsistent results.…”

Section: Implications For Patient-centered Outcomes: Patient-providermentioning

confidence: 99%

Monitoring style of coping with cancer related threats: a review of the literature

Roussi

Miller

2014

J Behav Med

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Building on the Cognitive-Social Health Information-Processing model, this paper provides a theoretically guided review of monitoring (i.e., attend to and amplify) cancer-related threats. Specifically, the goals of the review are to examine whether individuals high on monitoring are characterized by specific cognitive, affective, and behavioral responses to cancer-related health threats than individuals low on monitoring and the implications of these cognitive-affective responses for patient-centered outcomes, including patient-physician communication, decision-making and the development of interventions to promote adherence and adjustment. A total of 74 reports were found, based on 63 studies, 13 of which were intervention studies. The results suggest that although individuals high on monitoring are more knowledgeable about health threats, they are less satisfied with the information provided. Further, they tend to be characterized by greater perceived risk, more negative beliefs, and greater value of health-related information and experience more negative affective outcomes. Finally, individuals high on monitoring tend to be more demanding of the health providers in terms of desire for more information and emotional support, are more assertive during decision-making discussions, and subsequently experience more decisional regret. Psychoeducational interventions improve outcomes when the level and type of information provided is consistent with the individual's monitoring style and the demands of the specific health threat. Implications for patient-centered outcomes, in terms of tailoring of interventions, patient-provider communication, and decision-making, are discussed.

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“…Although instruments are available to measure knowledge [25][26][27], motivation [28] and self-efficacy [29,30], these are either non-specific for a genetic population [25,30] or the psychometric properties are insufficiently known [25,28]. To the best of our knowledge, there are no instruments available that measure all foregoing elements of counselees' barriers (not) to inform relatives.…”

Section: Introductionmentioning

confidence: 99%

Development of the Informing Relatives Inventory (IRI): Assessing Index Patients’ Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives

et al. 2014

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Disclaimer/Complaints regulationsIf you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: http://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible. Abstract Background Despite the use of genetic services, counselees do not always share hereditary cancer information with at-risk relatives. Reasons for not informing relatives may be categorized as a lack of: knowledge, motivation, and/or self-efficacy. Purpose This study aims to develop and test the psychometric properties of the Informing Relatives Inventory, a battery of instruments that intend to measure counselees' knowledge, motivation, and self-efficacy regarding the disclosure of hereditary cancer risk information to at-risk relatives.Method Guided by the proposed conceptual framework, existing instruments were selected and new instruments were developed. We tested the instruments' acceptability, dimensionality, reliability, and criterion-related validity in consecutive index patients visiting the Clinical Genetics department with questions regarding hereditary breast and/or ovarian cancer or colon cancer. Results Data of 211 index patients were included (response rate=62 %). The Informing Relatives Inventory (IRI) assesses three barriers in disclosure representing seven domains. Instruments assessing index patients' (positive) motivation and self-efficacy were acceptable and reliable and suggested good criterion-related validity. Psychometric properties of instruments assessing index patients knowledge were disputable. These items were moderately accepted by index patients and the criterion-related validity was weaker. Conclusion This study presents a first conceptual framework and associated inventory (IRI) that improves insight into index patients' barriers regarding the disclosure of genetic cancer information to at-risk relatives. Instruments assessing (positive) motivation and self-efficacy proved to be reliable measurements. Measuring index patients knowledge appeared to be more challenging. Further research is necessary to ensure IRI's dimensionality and sensitivity to change.

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Predictors of decision making in families at risk for inherited breast/ovarian cancer.

Cited by 20 publications

References 51 publications

Risky Business: Risk Perception and the Use of Medical Services among Customers of DTC Personal Genetic Testing

Risky Business: Risk Perception and the Use of Medical Services among Customers of DTC Personal Genetic Testing

Monitoring style of coping with cancer related threats: a review of the literature

Development of the Informing Relatives Inventory (IRI): Assessing Index Patients’ Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives

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