Parental disclosure of positive BRCA1/2 mutation status to children 10 years after genetic testing.

The disclosure of genetic information is an important issue in cancer prevention. This study based on a French national cohort of BRCA1/2 mutation carriers (GENEPSO-PS cohort, N=233) aimed to assess the prevalence of parental disclosure of genetic information to children 10 years after genetic testing, with a focus on gender differences. Most participants (n = 193, 131 women) reported having children. A total of 72.0% of offspring had received genetic information (88.8% for adult offspring, p < .001), with no differences according to the gender of the mutation-carrying parent. While female carriers disclosed genetic information more often than male carriers (54.1% versus 38.3%, p = .029), they did so irrespective of the gender of their offspring. Moreover, female carriers who had developed incident cancer after genetic testing disclosed genetic information more frequently than unaffected female carriers (70.7% versus 48.5%, p = .005). A multivariate analysis confirmed the effects of both gender and cancer on disclosure to offspring. The same results were obtained when the analysis was restricted to adult offspring. This study reveals high rates of disclosure of positive BRCA1/2 mutation status to children 10 years after genetic testing, irrespective of the gender of the carrier/offspring. However, female carriers disclosed genetic information more frequently than male carriers.

What makes decision-making difficult for oncologists faced with critical situations? The socio-affective side of the physician-patient relationship.

The aim of this qualitative study based on a Social Representations approach was to explore experienced oncologists' representations of difficult decision-making situations. In total, 22 semi-structured interviews with oncologists were conducted and analysed by performing a thematic content analysis. The thematic content analysis brought to light the main medical problem involved such as uncertainty, the lethal nature of cancer and physicians' specialties, as well as the psychosocial ones, such as patients' non-medical characteristics and the patient-physician relationships. This analysis also showed the painful tensions experienced by specialists in the context of decision-making situations when the medical arguments conflict with the psychosocial ones. These findings suggest that in order to understand more clearly the complex processes involved in difficult medical decision-making situations, studies on physicians' expertise should include the socio-affective climate involved in each patient-physician relationship.

Uptake of genetic counseling among adult children of BRCA1/2 mutation carriers in France.

OBJECTIVE: Genetic counseling in at-risk families is known to improve cancer prevention. Our study aimed to determine the rate of uptake of genetic counseling among adult children of BRCA1/2 mutation carriers and to identify the potential psychosocial factors associated with uptake of genetic counseling. METHODS: A self-reported questionnaire was mailed to 328 BRCA1/2 mutation carriers 10 years after BRCA1/2 test disclosure. Of the 233 carriers who returned the questionnaire (response rate = 71%), 135 reported having children over age 18 years and were therefore included in the analysis. Generalized estimating equations models were used to identify the factors associated with uptake of genetic counseling among adult children of mutation carriers. RESULTS: Data were gathered for a total of 296 children (46% male, 54% female). The vast majority were informed about the familial mutation (90.9%) and 113 (38%; 95% CI, 32%-44%) underwent genetic counseling. This percentage exceeded 80% in women over 40 years. In the multivariate model, female sex, advanced age, mutation in the father, diagnosis of cancer in the mutation-carrying parent after genetic testing, and good family relationships were all factors associated with higher uptake of genetic counseling. CONCLUSIONS: Adult children of BRCA1/2 mutation carriers in France do not undergo genetic counseling sufficiently often. Further studies should be conducted on the psychosocial factors that hinder the uptake of genetic counseling among adult children of BRCA1/2 mutation carriers.

Validation of a scale for assessing attitudes towards outcomes of genetic cancer testing among primary care providers and breast specialists.

OBJECTIVE: To develop a generic scale for assessing attitudes towards genetic testing and to psychometrically assess these attitudes in the context of BRCA1/2 among a sample of French general practitioners, breast specialists and gyneco-obstetricians. STUDY DESIGN AND SETTING: Nested within the questionnaire developed for the European InCRisC (International Cancer Risk Communication Study) project were 14 items assessing expected benefits (8 items) and drawbacks (6 items) of the process of breast/ovarian genetic cancer testing (BRCA1/2). Another item assessed agreement with the statement that, overall, the expected health benefits of BRCA1/2 testing exceeded its drawbacks, thereby justifying its prescription. The questionnaire was mailed to a sample of 1,852 French doctors. Of these, 182 breast specialists, 275 general practitioners and 294 gyneco-obstetricians completed and returned the questionnaire to the research team. Principal Component Analysis, Cronbach's α coefficient, and Pearson's correlation coefficients were used in the statistical analyses of collected data. RESULTS: Three dimensions emerged from the respondents' responses, and were classified under the headings: "Anxiety, Conflict and Discrimination", "Risk Information", and "Prevention and Surveillance". Cronbach's α coefficient for the 3 dimensions was 0.79, 0.76 and 0.62, respectively, and each dimension exhibited strong correlation with the overall indicator of agreement (criterion validity). CONCLUSIONS: The validation process of the 15 items regarding BRCA1/2 testing revealed satisfactory psychometric properties for the creation of a new scale entitled the Attitudes Towards Genetic Testing for BRCA1/2 (ATGT-BRCA1/2) Scale. Further testing is required to confirm the validity of this tool which could be used generically in other genetic contexts.

Patients' Non-Medical Characteristics Contribute to Collective Medical Decision-Making at Multidisciplinary Oncological Team Meetings.

BACKGROUND: The contribution of patients' non-medical characteristics to individual physicians' decision-making has attracted considerable attention, but little information is available on this topic in the context of collective decision-making. Medical decision-making at cancer centres is currently carried out using a collective approach, at MultiDisciplinary Team (MDT) meetings. The aim of this study was to determine how patients' non-medical characteristics are presented at MDT meetings and how this information may affect the team's final medical decisions. DESIGN: Observations were conducted at a French Cancer Centre during MDT meetings at which non-standard cases involving some uncertainty were discussed from March to May 2014. Physicians' verbal statements and predefined contextual parameters were collected with a non-participant observational approach. Non numerical data collected in the form of open notes were then coded for quantitative analysis. Univariate and multivariate statistical analyses were performed. RESULTS: In the final sample of patients' records included and discussed (N = 290), non-medical characteristics were mentioned in 32.8% (n = 95) of the cases. These characteristics corresponded to demographics in 22.8% (n = 66) of the cases, psychological data in 11.7% (n = 34), and relational data in 6.2% (n = 18). The patient's age and his/her "likeability" were the most frequently mentioned characteristics. In 17.9% of the cases discussed, the final decision was deferred: this outcome was positively associated with the patients' non-medical characteristics and with uncertainty about the outcome of the therapeutic options available. LIMITATIONS: The design of the study made it difficult to draw definite cause-and-effect conclusions. CONCLUSION: The Social Representations approach suggests that patients' non-medical characteristics constitute a kind of tacit professional knowledge that may be frequently mobilised in physicians' everyday professional practice. The links observed between patients' attributes and the medical decisions made at these meetings show that these attributes should be taken into account in order to understand how medical decisions are reached in difficult situations of this kind.

Awareness of acute myeloid leukaemia risk induced by diagnosis of a myelodysplastic syndrome.

Myelodysplastic syndromes (MDS) can evolve to acute myeloid leukaemia (AML) in approximately 30% of cases. Knowing their AML risk is important for patients because it might impact adherence to care and psychological health. The aim of this study was to evaluate the awareness of AML risk among MDS patients and to study the factors associated with this awareness. A self-administered questionnaire was mailed to all members of French and Australian patients' national MDS associations. Data of 301 patients were analysed. Patients were satisfied with the information they had received, but 33.2% did not know that they had an increased risk of developing AML. Younger age, higher-risk MDS treatment, preferences for health-related information and satisfaction with information provided about treatment were the factors independently associated with awareness of AML risk. Compared to unaware patients, patients knowing their risk were more likely to participate in a hypothetical clinical trial (83.0% vs 72.4%, p=0.043). More efforts are needed to provide more systematic information about AML risk to patients wishing to know it. More research is needed to study if increasing awareness can lead to more active engagement of MDS patients in their care and can increase the rate of clinical trial participation.

[The surrogate: Partner in the shared decision-making]. / Personne de confiance : un partenaire dans la décision partagée.

UNLABELLED: The legislative process of the surrogate appears to be unclear to health professionals and to patients and next of kin. To better adapt this process to the clinical practice our objective was here to document how the persons designated as surrogate perceived their role and how they described the difficulties encountered in oncology. METHODS: Qualitative survey with an ethnographic approach carried out in 2014-2015, fieldwork, face-to-face interviews (n=26 including 20 surrogates and 6 patients) in a mobile palliative care unit located at a Regional Comprehensive Cancer Centre. RESULTS: Close relationship, psychological and cognitive competences were the main attribute to designate a surrogate. Perceived roles included the fact to be involved in decisions, to protect the patient, to be present, and to be a messenger. This process gives the next of kin the feeling to be part of the patient management. In the context of divorced families, it sometimes allows to rehabilitate and to reinforce the affective links. Our data highlight the confusion between the designation of the 'person to call' and 'the surrogate'. DISCUSSION: Our results highlight the 'surrogate' protective role of the patient, and the positive sides of the process, in particular in the context of divorced/rebuilt families. We recommend splitting the process to designate the 'person to call' and the 'surrogate', as administrative and medical duties, respectively.

Disclosure of research results: a randomized study on GENEPSO-PS cohort participants.

BACKGROUND: There exist no recommendations as to how aggregate research results should best be disclosed to long-term cohort participants. OBJECTIVE: To study the impact of cohort results disclosure documents of various kinds on participants' satisfaction. DESIGN: Randomized study with a 2x2 factorial design. SETTING AND PARTICIPANTS: The GENEPSO-PS cohort is used to study the psychosocial characteristics and preventive behaviour of both BRCA1/2 carriers and non-carriers; 235 participants wishing to receive 'information about the survey results' answered a self-administered questionnaire. INTERVENTIONS: The impact of providing the following items in addition to a leaflet about aggregate psychosocial research results was investigated (i) an up-to-date medical information sheet about BRCA1/2 genetic topics, (ii) a photograph with the names of the researchers. MAIN OUTCOME MEASURES: Satisfaction profiles drawn up using cluster analysis methods. RESULTS: Providing additional medical and/or research team information had no significant effect on satisfaction. The patients attributed to the 'poorly satisfied' group (n = 60, 25.5%) differed significantly from those in the 'highly satisfied' group (n = 51, 21.7%): they were younger [odds ratio (OR) = 0.96, 95% confidence interval (0.92-0.99), P = 0.028], less often had a daughter [OR = 4.87 (1.80-13.20), P = 0.002], had reached a higher educational level [OR = 2.94 (1.24-6.95), P = 0.014] and more frequently carried a BRCA1/2 mutation [OR = 2.73 (1.20-6.23), P = 0.017]. CONCLUSIONS: This original approach to disclosing research results to cohort participants was welcomed by most of the participants, but less by the more educated and by BRCA1/2 carriers. Although an easily understandable document is necessary, it might also be worth providing some participants with more in-depth information.

General Practitioners and Breast Surgeons in France, Germany, Netherlands and the UK show variable breast cancer risk communication profiles.

BACKGROUND: No information is available on the attitudes of General Practitioners (GPs) and Breast Surgeons (BSs) to their delivery of genetic, environmental and lifestyle risk factor information about breast cancer. The aim of this study was to describe the Breast Cancer Risk Communication Behaviours (RCBs) reported by GPs and BSs in four European countries and to determine the relationships between their RCBs and their socio-occupational characteristics. METHODS: Self-administered questionnaires assessing breast cancer risk communication behaviours using vignettes were mailed to a sample of Breast Surgeons (BS) and General Practitioners (GP) working in France, Germany, the Netherlands, and the UK (N = 7292). Their responses to questions about the risk factors were first ordered and compared by specialty and country after making multivariate adjustments. Rather than defining a standard Risk Presentation Format (RPF) a priori, the various RPFs used by the respondents were analyzed using cluster analysis. RESULTS: Family history and hormonal replacement therapy were the risk factors most frequently mentioned by the 2094 respondents included in this study. Lifestyle BC risk factors such as obesity and alcohol were rarely/occasionally mentioned, but this point differed (p < 0.001) depending on the country and the specialty of the providers involved. Five distinct RPF profiles including the numerical/verbal presentation of absolute/relative risks were identified. The most frequently encountered RPF (34.2%) was characterized by the fact that it included no negative framing of the risks, i.e., the probability of not developing cancer was not mentioned. Age, specialty and country of practice were all found to be significant determinants of the RPF clusters. CONCLUSIONS: The increasing trend for GPs and BSs to discuss lifestyle risk factors with their patients suggests that this may be a relevant means of improving breast cancer prevention. Physicians' risk communication skills should be improved during their initial and vocational training.

Question prompt list responds to information needs of myelodysplastic syndromes patients and caregivers.

Myelodysplastic syndromes (MDS) are heterogeneous hematopoietic malignancies, often poorly understood by patients. Our aim was to obtain the views of MDS patients and family caregivers about a targeted question prompt list's (QPL) potential utility, and to evaluate their information needs. This targeted QPL, which included 53 suggested questions patients may ask onco-haematologists, was developed. A self-administered questionnaire eliciting feedback about the QPL and assessing its perceived usefulness was mailed to all members of Australian and French patients' national MDS associations. Respectively, 301 MDS patients and 53 caregivers responded. Most (76.4%) were satisfied with the information provided at MDS disclosure but would have liked more information about prognosis (69.3%). Consistently, the three most useful questions focused on the risk of leukaemic transformation, the impact of treatment on chances of survival and the severity of the MDS. The majority (62.9%) of both patients and caregivers perceived the QPL as 'absolutely' useful, particularly those who would have preferred more information about prognosis (adjusted odds ratio=2.3, 95% confidence interval [1.2-4.2], p=0.008). Our proposal of intervention through a QPL was generally welcomed and could particularly address specific MDS patient needs regarding prognosis information.

Impact of BRCA1/2 mutation on young women's 5-year parenthood rates: a prospective comparative study (GENEPSO-PS cohort).

Previous qualitative and intentions surveys have shown that the disclosure of a BRCA1/2 mutation might deter young women from becoming pregnant. However, to our knowledge, no comparative studies have ever documented the possibility that positive genetic test results might affect these women's future reproductive rates. Our aim was therefore to quantify the impact of BRCA1/2 mutation disclosure on long-term relationships between partners and childbearing rates. Participants were cancer-free women belonging to families in which a deleterious BRCA1/2 mutation had been identified, who had attended one of the 29 participating cancer genetic clinics for BRCA1/2 testing between 2000 and 2006. Logistic regression models were used to determine predictors of the 5-year self-reported parenthood rate. The sample consisted of 271 women aged 18-45 years (126 BRCA1/2 mutation carriers and 145 non-carriers). Couples had separated more frequently among BRCA1/2 carriers than non-carriers (10 vs. 3%, p = .040), especially among nulliparous carriers (13%). Among the 104 women who were childless at disclosure, disclosure of a BRCA1/2 mutation was not significantly associated with childbearing during the 5-year follow-up period [adjusted odds ratio .64, 95% confidence interval (CI) (.26, 1.57), p = .334]. Among the 167 women with at least one child at disclosure of a BRCA1/2 mutation had no conspicuous effect on the childbearing trends [adjOR .88, 95% CI (.35, 2.21), p = .787]. The disclosure of a BRCA1/2 mutation might impact couples' relationships and future mothering rates, particularly among nulliparous women. Studies on larger populations are now required to confirm these findings.

"Maybe they have found something new" participants' views on returning cohort psychosocial survey results.

BACKGROUND: Although greater attention is currently being paid to participants in research, no studies have dealt so far with the issue of returning aggregate psychosocial results to cohort participants. OBJECTIVE: (i) To explore participants' views about disclosure of the aggregate results of a French national psychosocial cohort survey on the epidemiology of preventive behaviour in women from families with a hereditary breast cancer risk. (ii) To assess whether it is worth consulting participants before designing the disclosure process. DESIGN: A qualitative study using semi-structured face-to-face interviews and a thematic analysis based on Grounded Theory methods. PARTICIPANTS: Nineteen interviews were conducted with cancer-free female BRCA mutation carriers/non-carriers aged 31-79 who had participated in a cohort survey by answering self-administered questionnaires. RESULTS: Participants showed considerable interest in the issue of result disclosure. The preferences expressed about disclosure were rarely relevant to the topic investigated, however, as they often focused on medical knowledge about BRCA and not on the psychosocial findings obtained. This confusion may have been due to the participants' experience of the survey procedures, including its longitudinal nature, the occurrence of very few interactions with the investigators and the wide range of topics addressed in the questionnaires. CONCLUSION: Investigators should ascertain participants' expectations and preferences by consulting them before disclosing the results obtained. Although the disclosure process may not meet participants' expectations completely, consultation is the key to preventing them from having irrealistic expectations about the information they are going to receive.

Cigarette smoking in women after BRCA1/2 genetic test disclosure: a 5-year follow-up study of the GENEPSO PS cohort.

PURPOSE: This study aimed to measure patients' smoking patterns for 5 years after BRCA1/2 test result disclosure. METHODS: A national cohort consisting of 621 French cancer-free women from families with BRCA1/2 mutations (mean age (SD): 40.5 years (11.5 years)) were included from December 1999 to January 2006, before disclosure of genetic test results, and followed for 5 years. They completed self-administered questionnaires about their cigarette smoking behaviors before receiving their test results (baseline) and 6, 12, 24, and 60 months after disclosure. Multivariate statistical analyses of the changes in participants' smoking behaviors were performed using a zero-inflated Poisson mixed model. RESULTS: Baseline smoking was found to depend on age, educational level, marital status, alcohol consumption, body mass index, and cancer risk perception. The zero-inflated part of the model showed the occurrence of no significant changes in the percentage of smokers during the 5 years after disclosure of the BRCA1/2 test results; however, daily smoking among BRCA1/2 carriers decreased significantly compared with that of noncarriers (adjusted hazard ratio = 0.83; (95% confidence interval: 0.69-0.99); P = 0.04) after adjusting for baseline smoking behavior. CONCLUSION: It would be worth investigating the possibility of counseling women during the genetic testing process about the multiple risk factors involved in cancer, such as genetic and lifestyle factors.

[Having a child and PND/PGD access in women with a BRCA1/2 mutation? Different approach whether ill or healthy]. / Avoir un enfant et accéder au DPN/DPI pour des femmes porteuses d'une mutation BRCA ? Malades et indemnes appréhendent la question différemment.

Genetic tests in families with a mutation related to breast and ovarian cancers (BRCA1/2) are now offered to the persons before completion of their reproductive project. The aim of this qualitative study was to descriptively explore how the issues of reproduction are faced in women belonging to these families, and how the possible use of prenatal diagnostic (PND) and preimplantation genetic diagnosis (PGD) would be faced in a theoretical context. We conducted in-depth interviews, face to face, according to the so-called Grounded Theory approach. Twenty women with a BRCA genetic mutation participated in the study (age range: 31-57 years); 12 have had a breast and/or ovarian cancer. The knowledge of having the mutation did not modify the parental project; however prophylactic anexectomy was likely to alter it in some women. If the majority of women were in favor of PGD (n = 14), medical termination of pregnancy was a constraint towards the position in relation to PND. Besides ethical and moral arguments, the women's attitudes were constructed differently according to their own personal or familial experience of the disease. The women's perceptions of the cancer severity, risk and cure were organized according to this experience.

Contributing to research via biobanks: what it means to cancer patients.

CONTEXT AND OBJECTIVE: Biobanks have become strategic resources for biomedical and genetic research. The aim of the present empirical qualitative study was to investigate how patients with cancer perceive and experience the process of donation to biobanks, focussing on the subjective meanings associated with their decisions when they are asked in a routine context to agree to their own biological specimens being used for research projects. DESIGN: A qualitative study, using semi-structured interviews to explore in depth the reasons why patients with cancer agree to participating in biobanking. Participants Nineteen patients (aged 28-82 years) being treated for colorectal cancer or leukaemia at a French cancer centre participated in this study. RESULTS: Contributing to biobanks was experienced here as a rewarding and empowering individual experience because of the psychological issues involved, such as feelings of hope associated with research, because it makes the relationship with researchers and clinicians less asymmetrical, revalorization of otherwise 'wasted' tissue, and also as an act of solidarity and reciprocity, which makes patients part of a community. DISCUSSION AND CONCLUSION: Patients seem to regard contributing to biobanks as an act of benevolence, which they are motivated to perform because of societal welfare considerations as well as the hope of subjective benefits. Knowledge about the patients' perspective and of the psychological rewards associated with tumour donation should be taken into account by physicians and caregivers discussing this topic with their patients.

Which factors predict proposal and uptake of psychological counselling after BRCA1/2 test result disclosure?

OBJECTIVE: The aim of this study is to prospectively determine the factors contributing to whether unaffected women from BRCA1/2 families reported that clinicians proposed psychological consultations and that they had attended these consultations during the genetic testing process. METHODS: A prospective study was performed on a national cohort, using self-administered questionnaires to determine the rates of proposal and use of psychological services at the time of BRCA1/2 test result disclosure (N = 533) and during the first year after disclosure (N = 478) among unaffected French women from BRCA1/2 families who had undergone genetic testing for BRCA1/2. Multivariate adjustment was carried out using logistic regression models fitted using generalized estimation equations, with the genetic testing centre as the clustering variable. RESULTS: At the time of BRCA1/2 test result disclosure, a psychological consultation was proposed by cancer geneticists to 72% and 32% of the carriers (N = 232) and noncarriers (N = 301), respectively (p < 0.001). One year after disclosure, 21% of the carriers had consulted a psychologist, versus 9% of the noncarriers (p < 0.001). Both the proposal and the uptake depended on the women's BRCA1/2 mutation carrier status (proposal adjusted odds ratio (AOR): 4.9; 95% confidence interval (CI) 3.4-7.2; uptake AOR: 2.2; 95% CI 1.2-4.0), their level of education (proposal AOR: 1.7; 95% CI 1.1-2.7; uptake AOR: 4.5; 95% CI 1.7-12.1) and the distress they experienced about their genetic test results (proposal AOR: 1.02; 95% CI 1.01-1.03; uptake AOR: 1.04; 95% CI 1.02-1.06) CONCLUSIONS: Determinants of the proposal/uptake of psychological consultations in the BRCA1/2 testing process highlight the need for inventive strategies to reach the different types of women's profiles.

Cancer risk communication, predictive testing and management in France, Germany, the Netherlands and the UK: general practitioners' and breast surgeons' current practice and preferred practice responsibilities.

Genetic testing has its greatest public health value when it identifies individuals who will benefit from specific interventions based upon their risk. This paradigm is the basis for the use of predictive tests, such as BRCA1/BRCA2 testing which has become part of clinical practice for more than a decade. Currently predictive BRCA1/BRCA2 testing is offered to women using low, moderate and high risk based upon family history as cut-off levels. Non-genetic health professionals such as general practitioners (GPs) and breast surgeons (BS) are seen as gatekeepers to manage demand and/or facilitate access to appropriate services for high-risk patients. Data about current practices are lacking. The paper presents data on the current practice of GPs' and BS' cancer risk assessment, referral practices and preferred practice responsibilities for women at risk for familial breast cancer in France, Germany, the Netherlands and the UK derived by a self-administered questionnaire send to a representative sample of GPs and BS in the four countries. One thousand one hundred ninety-seven GPs and 1,223 BS completed the questionnaire. Both GPs and BS reported that they are consulted by a considerable number of patients presenting with concerns about a family history of cancer. Both commonalities and striking differences could be observed between GPs and BS from the four participating countries. GPs from France and Germany reported significantly higher proportions taking a family history of cancer including the extended family than GPs from the Netherlands and the UK. Most GPs from France, Germany and the Netherlands stated their willingness for providing risk assessment for an unaffected (high-risk) woman with a family history of breast cancer and the vast majority of BS from all four countries reported that they themselves would provide risk assessment for an unaffected (high-risk) woman with a family history of breast cancer. However, a substantial number of both GPs and BS would not have taken an appropriate family history for their patient failing to take into account the paternal side of the family. GPs from Germany reported a significantly lower readiness to refer a patient with a family history of a BRCA1 mutation for specialist genetic counselling when compared to the GPs from the other countries. GPs and BS from France, Germany and the Netherlands significantly less often assigned practice responsibilities to a genetic specialist as compared to the participating GPs and BS from the UK. The outcome of the study confirms the need for capability building in genetics for non-genetic health professionals. Using genetic risk assessment tools without a full understanding could result in missed opportunities for cancer prevention and harm patients. In order to provide best possible services for high-risk patients presenting with cancer concerns, close collaboration with clinical geneticists should become routine part of mainstream medical practice.

Psychometric properties of a French version of a Dutch scale for assessing breast and body image (BBIS) in healthy women.

BACKGROUND: Genetic testing among women for BRCA1/2 mutation can have various psychological effects, such as those focusing on body image. The aim of this study was to examine the psychometric properties of a generic scale assessing breast and body image (BBIS) in healthy women tested for BRCA1/2 mutations. METHODS: A Dutch body image scale focusing on both general and breast-related body image was translated into French. It was presented to a French cohort of female cancer-free BRCA1/2 mutation carriers and non-carriers (N = 568). The psychometric properties of the scale were studied by assessing its dimensional and factorial structure, internal consistency, construct-related validity, and external validity. RESULTS: The scale was found to be a satisfactory psychometric tool for assessing both body image and breast image. The three main dimensions which emerged were classified under the headings "values attached to body image", "satisfaction with body image and perceived attractiveness", and "satisfaction with breasts". The BBIS scores were not significantly associated with the participants' socio-demographic characteristics or their BRCA1/2 mutation carrier status, but significant associations were observed between these scores and the women's medical and behavioural characteristics. CONCLUSIONS: The BBIS is a generic tool which can be used to assess body image in either affected or unaffected women. The scale will have to be administered to other populations in order to confirm its validity.

Is the psychological impact of genetic testing moderated by support and sharing of test results to family and friends?

Receiving the results of genetic tests for a breast and ovarian cancer susceptibility can be a stressful experience. Here we studied the effects of social support (SS) and the sharing of test results on the psychological impact of BRCA1/2 test result disclosure. We also compared carriers and non-carriers on sharing, SS and psychological impact. Five-hundred and twenty-two unaffected women were followed prospectively for 2 years after receiving their test results. Psychological impact was measured on the impact of event scale. Multivariate multi-level models were used, and all the analyses were stratified depending on mutation status (carriers vs non-carriers). Two weeks after receiving their BRCA1/2 results, carriers had shared their test results less frequently than non-carriers (p < 0.01). Sharing test results was not significantly associated with psychological impact. Availability of SS was significantly associated with better psychological adjustment across time among carriers (p < 0.01), but not among non-carriers. For female BRCA1/2 mutation carriers, the importance of SS should be stressed, and possible ways of enlisting people in their entourage for this purpose should be discussed in the context of clinical encounters.