Information-Seeking Behaviour and Psycho-Social Interactions during the Genetic Testing Process

Abstract

Objectives: The first aim of this study was to investigate the information-seeking behaviour (ISB) of women attending cancer genetic consultations at which the possibility of BRCA testing is considered. We focused here specifically on ISB apart from the cancer genetic consultation, i.e. on what complementary sources of information about genetic testing were consulted and what factors were involved in this behaviour. The second aim was to study the role of the social network used by the patients to collect various opinions on which to base their decisions about being tested. Methods: A prospective cohort study (2000–2002) was therefore carried out on all women attending a single cancer genetic clinic in France after a BRCA1/2 analysis had been proposed. Closed questionnaires were administered before and after the second cancer genetic consultation. The purpose of this consultation was to confirm the patient’s decision to be tested. Results: Results were analysed in 108 subjects (mean age 47 years, SD 11 years; 74% affected by breast/ovarian cancer). Prior to the 2nd consultation, 35.2% of the women had actively looked for information about BRCA1/2 testing, as compared to 25.0% afterwards. After multivariate adjustment by logistic regression, the pre-consultation ISB was found to be associated with greater satisfaction with the information about the psycho-social consequences of genetic testing [adjusted odds ratio (OR_adj) 1.03, 95% confidence interval (CI) 1.01–1.06] (scale from 0 to 100) and about the certainty of being a gene carrier (OR_adj 3.04, 95% CI 1.16–7.98). Those who actively looked for complementary information were also more often accompanied at the consultation by a family member (OR_adj 4.82, 95% CI 1.85–12.56). The other variables tested (depression, coping, socio-demographic and medical characteristics) were not significant (p > 0.05). The role of the social network in the decision making process was perceived as being less helpful when the persons consulted tended to have neutral or unfavourable opinions about genetic testing. Conclusions: Few women actively sought complementary information about BRCA genetic testing in addition to the cancer genetic consultation. Those who did so differed from the others in terms of their social network and their satisfaction with the consultation. The cancer geneticist is the key actor in women’s decision making about genetic testing.

Psychosocial aspects of risk communication and mutation testing in familial breast-ovarian cancer

“…In new research directions, one interesting study has explored the use of a screening tool to assess concerns associated with genetic testing [52], whereas another examined other information sources used by women during the testing process [53]. An effective group psychological intervention to help women with a BRCA1/2 mutation has been evaluated and demonstrated significant improvement in psychosocial functioning with benefit to women's decision making and family disclosure [54].…”

Prevalence and correlates of mothers and fathers attending pretest cancer genetic counseling together

“…It is unknown if (or how many) fathers who were invited to attend sessions by mothers failed to do so. The study did not directly assess fathers’ motivations for session participation or nonparticipation, nor did it examine father’s attendance at posttest counseling (though the literature suggests pretest and posttest support systems are similar [25]). Lastly, the cross-sectional design of the study does not permit causal modeling of fathers’ session attendance.…”

“…Given the potential impact and outcomes of genetic testing for both of the members of a mother-father parenting dyad, providers of genetic services sometimes encourage joint attendance at genetic counseling, though not uniformly so [25–27]. Questions remain about how often mothers and fathers attend such counseling together, factors associated with father attendance, if fathers’ attendance makes significant differences in the counseling process and outcome, and in later communication with offspring.…”

“…However, over 50% of women attend pre- and posttest genetic counseling for BRCA1/2 mutations without the benefit of a support person, and many of these women are also mothers of minor-age children [23,25]. There is a need to more closely examine how often fathers attend genetic counseling sessions for BRCA1/2 with mothers, and to identify sociodemographic, clinical, and psychosocial factors associated with attendance.…”

Communicating Familial Risks: Individual and Community Issues Involved in Cancer Genetics

“…Cypowyj et al [9] look at the information sources that women use on their own during the genetic testing process. They also describe the interactions which occur between these women and their social network, relatives and doctors when they are exchanging opinions about breast/ovarian cancer genetic testing.…”