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International audience; 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.

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 asses...

The disclosure of genetic information is an important issue in cancer prevention. This study based on a French national cohort of

International audience; 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.

Resume Introduction L’analyse interpretative phenomenologique (IPA) est une methode d’analyse qualitative du discours propice a la comprehension de l’experience vecue et du sens que les individus donnent a leurs evenements de vie et dont les developpements en psychologie sont foisonnants. Objectifs En s’appuyant sur la presentation detaillee d’une IPA conduite sur un entretien de recherche portant sur les pratiques de decisions medicales difficiles en oncologie, cet article vise a montrer l’interet de recourir a cette methode dans le cadre d’une etude psychosociale. Resultats L’application des differentes etapes de l’IPA au cas d’un chirurgien a permis la mise en evidence de l’implication d’enjeux interpersonnels (relations avec les patients) et sociaux (attentes liees a la specialite du medecin) dans le vecu complexe de cette pratique. Conclusion L’IPA est une methode d’analyse feconde pour reveler les dynamiques psychosociales des comportements et realiser une interpretation psychosociale du sens qu’ils revetissent pour les individus.

International audience; AbstractBackgroundSelective estrogen receptor modulators, such as tamoxifen, reduce breast cancer risk by up to 50% in women at increased risk for breast cancer. Despite tamoxifen’s well-established efficacy, many studies show that most women are not taking up tamoxifen. This systematic literature review aimed to identify the motivators and barriers to tamoxifen use ‘s amongst high-risk women.MethodsUsing MEDLINE, PsycINFO, and Embase plus reviewing reference lists of relevant articles published between 1995 and 2016, 31 studies (published in 35 articles) were identified, which addressed high-risk women’s decisions about risk-reducing medication to prevent breast cancer and were peer-reviewed primary clinical studies.ResultsA range of factors were identified as motivators of, and barriers to, tamoxifen uptake including: perceived risk, breast-cancer-related anxiety, health professional recommendation, perceived drug effectiveness, concerns about side-effects, knowledge and access to information about side-effects, beliefs about the role of risk-reducing medication, provision of a biomarker, preference for other forms of breast cancer risk reduction, previous treatment experience, concerns about randomization in clinical trial protocols and finally altruism.ConclusionsResults indicate that the decision for high-risk women regarding tamoxifen use or non-use as a risk-reducing medication is not straightforward. Support of women making this decision is essential and needs to encompass the full range of factors, both informational and psychological.

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., Les tests génétiques dans les familles ayant une mutation prédisposant aux cancers sein/ovaire (BRCA1/2) sont maintenant accessibles à des personnes n’ayant pas encore accompli leur projet parental. L’objectif de cette étude qualitative était d’explorer de manière descriptive comment se posent les questions de reproduction pour des femmes appartenant à ces familles, et comment s’argumentent dans un contexte théorique les attitudes par rapport au diagnostic prénatal (DPN) et/ou préimplantatoire (DPI). Nous avons utilisé une méthodologie par entretiens de recherche approfondis, menés en face-à-face, selon l’approche dite grounded theory. Vingt femmes porteuses d’une mutation BRCA1/2ont été incluses (31-57ans); 12ayant eu un cancer du sein et/ou de l’ovaire. La connaissance de la mutation n’a pas modifié fondamentalement le projet parental mais l’annexectomie prophylactique en a fait varier sa dynamique pour certaines. Si la majoritédes femmes étaient favorables au DPI (n = 14) la position par rapport au DPN était freinée par l’interruption médicale de grossesse. À côté des argumentations éthiques et morales, les positions des femmes s’élaborent différemment en fonction de leur expérience de la maladie, personnelle ou familiale. Cette expérience organise les perceptions que les femmes ont de la gravité, du risque et de la curabilité de cette maladie.

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

BRCA1/2 carriers have a higher risk of developing breast and ovarian cancer at a younger age. Preimplantation genetic diagnosis (PGD) and prenatal diagnosis (PND) are two of the few options available to avoid transmitting the mutation. To inform the bioethics debate about authorization, a contingent valuation survey elicited preferences regarding access to PGD and PND from a sample of 460 unaffected by cancer BRCA1/2 carriers (GENEPSO cohort). We find that the respondents can be classified into three groups: one opposed to PGD/PND (28.3%), one strongly in favour of PGD/PND (45.8%), and one in an intermediate position (25.9%). We look for the determinants of these preferences, especially of the willingness to pay for PGD/PND. Overall, we find that BRCA1/2 carriers support access to PGD/PND, which has implications for recommendations to decision-makers.JEL Codes: C01, C83, D04, D79, I19.

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

Resume Le dispositif de la « personne de confiance » peine a trouver un contenu aupres des professionnels de sante et semble difficilement compris par les patients et leurs familles. Notre objectif est de comprendre comment les personnes designees « personne de confiance », dans un contexte de soins palliatifs en oncologie, percoivent leur role et de decrire les difficultes qu’elles expriment, afin de mieux adapter ce dispositif aux pratiques. Methodologie Enquete qualitative par approche ethnographique (observations de terrain ; entretiens, n = 26, dont 20 « personnes de confiance » et 6 patients) dans une unite mobile de soins palliatifs d’un centre regional de lutte contre le cancer en 2014–2015. Resultats La proximite et les qualites psychologiques et cognitives sont les principales raisons pour designer une personne de confiance. Les roles percus sont : responsabilite dans la decision, protection du patient, de veille ou de messager. Ce dispositif donne aux proches le sentiment d’etre acteurs de la prise en charge du malade. Dans le contexte de familles recomposees, il permet parfois une restauration ou un renforcement des liens affectifs. Nos donnees soulignent la confusion des designations de la « personne a prevenir » et de la « personne de confiance ». Discussion Nos resultats soulignent le role de protection du patient, et les cotes positifs du dispositif pour les personnes de confiance elles-memes, notamment dans le contexte des familles recomposees. La confusion personne a prevenir/de confiance nous amene a recommander la separation de ces 2 designations en 2 actes differenties, administratif et medical.

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.

Objective To develop a scale for assessing Respondents' Perceptions of Health Research Questionnaires (the REP-HQ Scale) and test this scale psychometrically. Study Design and Setting A scale was drawn, based on detailed content analysis of patients' free comments, which were collected prospectively in a 2-year cohort study ( n = 228). The questionnaire corresponding to this scale was subsequently completed by a cohort of female BRCA1/2 carriers/noncarriers not affected by cancer, who had been followed up for 5 years since test result disclosure ( n = 246). Principal component analysis, Cronbach's alpha coefficient, and Pearson's correlations were used in the statistical analyses. Results The perceived effects that emerged from the respondents' responses were analyzed and classified under the headings: “Useful medical information,” “Usefulness of research,” and “Labeling intrusion.” Cronbach's alpha coefficients on the three dimensions were 0.75, 0.64, and 0.56, respectively. Carriers obtained lower scores than noncarriers on the first dimension ( P = 0.005) and on the overall score ( P = 0.002). Conclusions The REP-HQ scale is the first generic tool to be developed for assessing participants' perceptions about the effects of health research questionnaires. Further testing is now required to confirm the validity of the findings obtained here by applying this tool in other settings.

Disclosing overall scientific results to clinical trial participants has become an ethical obligation. Here we studied how participants understand these results in view of their experience of clinical trials and illness in general and what modes of disclosure they preferred. Interviews were conducted with 29 breast cancer patients in France during 2009, using an in-depth qualitative approach. The findings obtained show that the "results" of research are understood quite differently by various patients depending on their expectations about clinical trials. Most of the women interviewed expected to receive personally tailored results at an individual encounter with their own clinical oncologist. Their preferred mode of disclosure was a consultation with their doctors because personal encounters promote mutual recognition and set up a symbolic process of exchange. The results of this study show that medical interventions should not be regarded solely from the technical point of view, but also in terms of the social relationships involved.

Objective To identify the factors associated with long-term regrets expressed a posteriori by randomized controlled trial (RCT) participants questioned about their decision to participate in an RCT. Study Design and Setting Participants were questioned 6 years on average after their inclusion in a breast cancer adjuvant therapy RCT. Among 115 women from 21 centers, 93 (81%) answered a self-administered questionnaire based on the Decision Regret Scale (DRS). Results Mean DRS score was 16.8 (standard deviation = 15.9); 43.0% of participants expressed mild regret, and 25.8% expressed moderate to strong regret. A quarter of the women (25.6%) said that the decision was taken by the doctor alone, and 13.5% said it was not consistent with their own wishes. In the multivariate ordinal regression analysis, an involuntarily passive role in decision making was found to be associated with greater regret (cumulative proportional odds ratio = 7.3, 95% confidence interval = 2.0–27.6), regardless of age, and being allotted or not to the standard treatment in the RCT. Conclusion Whether patients’ regret depended on their level of participation in the decision making or vice versa could not be determined in this cross-sectional survey, but efforts should be made to ensure that patients’ participation in trials is always based on an active personal decision.

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.

Cette revue de la litterature a pour objectif de presenter le point de vue de patientes atteintes d’un cancer du sein vis-a-vis de l’utilisation des profils d’expression genique de la tumeur pour definir une strategie therapeutique. Nous identifions les idees, les attentes ou les craintes qui pourraient constituer une entrave, ou une facilitation, a la mise en œuvre et a la diffusion de ces methodes en pratique clinique. Globalement, les patientes s’averent tres favorables a l’utilisation d’un test genomique pour selectionner le traitement le plus approprie, dans la logique du concept de medecine personnalisee. Un certain nombre de confusions et d’inquietudes sont neanmoins observees. Leur connaissance et leur clarification ulterieure par les cliniciens devraient permettre aux patientes de prendre une part plus active et plus eclairee aux prises de decision therapeutique, de mieux vivre la periode d’annonce des traitements et d’ameliorer leur vecu ulterieur.

In French hospitals, patients are increasingly asked to participate in research, particularly in oncology where the development of research is stimulated at a national level (plan Cancer). This article express our thoughts based on the literature about the perception by cancer patients of research activities developed in the care centre where they are treated. We focus mainly on the consent for biobanking in a context in which cancer patients are routinely requested to donate tumour samples for research. This article presents the results of a survey among patients treated in a comprehensive cancer centre. The available literature shows that patients have an overall positive image of medical research and of the existence of research activities intertwined with medical care. Patients are globally expressing a wish for more proposals to participate in research in collaboration with scientific teams.

PELLEGRINI I., RAPTI M., EXTRA J.-M., PETRI-CAL A., APOSTOLIDIS T., FERRERO J.-M., BACHELOT T., VIENS P., JULIAN-REYNIER C. & BERTUCCI F. (2011) European Journal of Cancer Care21, 242–250 Tailored chemotherapy based on tumour gene expression analysis: breast cancer patients' misinterpretations and positive attitudes The aim of this study was to document how breast cancer patients perceive their prognosis and a tailored treatment based on tumour gene expression analysis, and to identify the features of this approach that may impact its clinical application. In-depth interviews were conducted at three French cancer centres with 37 women (35–69 years of age) with node-positive breast cancer undergoing an adjuvant chemotherapy regimen defined on the basis of the genomic signature predicting the outcome after chemotherapy. Several concerns were identified. First, some misconceptions about these methods were identified due to semantic confusions between the terms ‘genomic’ and ‘genetic’, which generated anxiety and uncertainty about the future. Second, the ‘not done’ and ‘not interpretable’ signatures were misinterpreted by the women and associated with highly negative connotations. However, the use of tumour genomic analysis to adapt the treatment to each patient received most of the patients' approval because it was perceived as an approach facilitating personalised medicine. In conclusion, improving the quality of provider/patient communications should enable patients to play a more active part in the decision making about their treatment. This will ensure that those who agree to have tumour gene analysis have realistic expectations and sound deductions about the final result disclosure process.

Oncogenetic consultations and predictive BRCA1/2 testing are intertwined processes and the specific impact of these genetic tests if performed alone through direct-to-consumer offers remains unknown. Noteworthy, the expectations of patients vary with their own status, whether they are affected or not by breast cancer at the time genetic testing is performed. The prescription of genetic tests for BCRA mutations has doubled in France between 2003 and 2009. There is a consensus on the fact that genetic results disclosure led to a significant increase in the knowledge and understanding that the patients have of the genetic risk and also changed the medical follow-up of these patients. Evaluating the psychological burden of tests disclosure did not reveal any major distress in patients who are followed by high-quality multidisciplinary teams. Longitudinal cohorts studies have now evaluated the perception and behaviour of these patients, and observed sociodemographic as well as geographic and psychosocial differences both in the acceptation of prophylactic strategies such as surgery, and time to surgery.

In this review, the national guidelines and recommendations for genetic testing for familial/hereditary breast cancer from the UK, France, the Netherlands and Germany were evaluated as to the inclusion criteria for genetic testing. In all four countries, access to genetic testing relies basically on the family history of breast and ovarian cancer. Similarities are obvious for most selection criteria. All four guidelines recommend embedding genetic testing within a framework of genetic counselling, and all agree to perform genetic testing first in an affected person. However, there are differences regarding the thresholds based on certain familial constellations, detailed description of selection criteria, the degree of relatedness between affected individuals and the counsellee, the age of diagnosis, the individual history of early onset breast cancer, bilateral breast cancer, the tumour morphology or the access to intensified surveillance. These differences and open questions not covered by the guidelines, e.g. on how to deal with phenocopies, unclassified variants, genetic variants in newly identified breast cancer susceptibility genes or with family constellations not fitting the criteria, are discussed. New evidence is usually slowly integrated into the guidelines. An exchange process towards the harmonization of the guidelines will ensure high quality health care across Europe.

We described and compared breast and ovarian screening practices in the 2-year period following test result disclosure in female non-carriers from BRCA1/2 mutation-positive families living in two countries, France and Quebec, Canada, which provide universal health care. Four hundred and two (France n=293; Quebec n=109) unaffected female non-carriers from BRCA-proven mutation families provided information about the uptake of mammography, clinical breast examination, breast self-examination, and ovarian ultrasounds using self-administered questionnaires. The frequency of screening practices between study cohorts were compared using logistic regression. Annual mammography was conducted in 23 and 43% of French and Quebecer women participants < 50 years of age, respectively (adjusted odds ratio (aOR)-2.72; 95% confidence interval (CI), 1.08-6.81). In women >= 50 years of age, mammography was conducted in 49 and 65% of French and Quebecer participants (aOR=1.77; 95% CI, 0.07-4.51). Overall, 33% of French women and 39% of Quebecer women underwent at least one ovarian ultrasound during the 2-year period following BRCA1/2 test result with no significant difference between cohorts of women < 50 years of age. Among older women, Quebecers reported more frequently than French women that they had undergone ultrasound once (aOR=3.00; 95% CI, 1.02-8.83). The frequency of cancer screening practices for female non-carriers from BRCA1/2 mutation-positive families in both France and Quebec exceeded those recommended for similarly aged women in the general population. Our findings highlight the need for clearcut recommendations on the follow-up of women from BRCA1/2 families who are not themselves carriers of a BRCA1/2 mutation

We investigated whether health-related quality of life (HRQL) depends on cancer type, after adjustment for demographic and medical variables. A French national population-based survey was conducted between November and December 2004 to assess surviving cancer patients' HRQL 2 years after diagnosis. HRQL was measured by the 36-Item Short Form Survey scale. The sample included 3900 persons. All cancer diagnoses were entered in the study. We demonstrated that medical and treatment variables have an impact on patients' physical HRQL but not on mental HRQL. Cancer type impacted on physical HRQL, with those suffering from upper aerodigestive tract /lung cancers and haematological malignancies being affected to a greater degree. Disturbing side effects impacted both HRQL domains. Socio-demographic variables had statistically significant effects but not clinically meaningful ones. Socio-economic variables led to potentially clinically meaningful differences for cancer patients' HRQL and represented a socio-economic gradient in HRQL among cancer survivors. From our results, we may assert that cancer survivors, 2 years after cancer diagnosis, share a similar pattern of psychological morbidity, independent of cancer type. Patients disproportionately affected by cancer, such as those with lower educational levels and income, need to be identified and targeted and interventions which address their unique needs and concerns need to be developed.

Western health care systems are facing today increasing movement of genetic knowledge from research labs into clinical practice. This paper reports the results of a survey that addressed the confidence of primary care physicians in their ability to carry out basic medical genetic tasks. The survey was conducted in five countries (France, Germany, The Netherlands, Sweden and the UK). Stratified random samples were drawn from primary care physicians in the five countries representing a sampling frame of 139,579 physicians. Stepwise binary logistic regression procedures were performed to identify the predictor variables for self-reported confidence. Three thousand six hundred eighty-six physicians participated and filled out a self-administered questionnaire. The margin of error for accurate representation of each group of European general practitioners and specialists in the total sample is 2.9% for GP, 2.8% for obstetricians/gynaecologists (OB/GYN) and for paediatricians (PAED) 2.6% (95% confidence level). Confidence in their ability to carry out basic medical genetic tasks is low among participating primary care physicians: 44.2% are not confident, 36.5% somewhat confident, confident or very confident are 19.3%. In each country, those confident/very confident represent less than 33% of the participating physicians. Primary care physicians who report the lowest levels of confidence prove to be those least exposed to medical genetics information and training. Although there are significant differences in the way in which professional education is organised and practice is regulated across European countries, there is a need for a coordinated European effort to improve primary care physicians' background in medical genetics.

Objectif Cette etude a pour objectif de developper une echelle evaluant les attitudes positives et negatives vis-a-vis des tests genetiques, applicable dans differents contextes, et d’en faire une validation psychometrique dans le cas de la mutation BRCA1/2 au sein d’un echantillon de medecins francais non specialises en genetique. Methodes Les donnees utilisees dans cette etude sont issues d’une enquete transversale internationale (etude europeenne INCRISC) conduite en 2010 aupres d’un echantillon de medecins susceptibles de prendre en charge les familles concernees en dehors du contexte specialise de l’oncogenetique. Nous analyserons ici les donnees concernant les medecins francais. Le questionnaire comprenait 14 items evaluant les benefices attendus des tests (huit items) ainsi que leurs inconvenients (six items) etablis par un groupe d’experts internationaux specialistes dans le domaine de la genetique. Enfin, un item general mesurait le niveau d’accord avec l’assertion selon laquelle les benefices des tests depassaient leurs inconvenients ce qui justifiaient leur prescription. Ce questionnaire a ete envoye a 1852 medecins francais. Parmi eux, 275 medecins generalistes, 182 medecins specialistes du sein et 294 medecins gyneco-obstetriciens ont repondu a l’enquete. Resultats Une analyse en composantes principales a permis d’identifier trois dimensions : « L’anxiete, les conflits et la discrimination generes par le test », « L’information sur le risque genetique », et « La prevention et la surveillance ». Les α de Cronbach's pour ces trois dimensions etaient respectivement de 0,79, 0,76 et 0,62 et chacune des trois dimensions etaient fortement correlees a l’item global. Conclusions Le processus de validation de l’echelle a montre des proprietes psychometriques satisfaisantes dans le cadre de la mutation BRCA1/2, pour creer la nouvelle echelle « Attitudes Towards Genetic Testing for BRCA1/2 (ATGT-BRCA1/2) Scale ». D’autres etudes sont necessaires pour confirmer la validite de cet outil qui pourrait etre utilise de facon generique dans d’autres contextes genetiques.

Purpose Preimplantation genetic diagnosis (PGD) and prenatal diagnosis (PND) practices for inherited predisposition to cancer are heterogeneous in industrialized countries. In France, permission to perform PGD/PND must be obtained from registered Multidisciplinary Prenatal Diagnosis Teams (MPDTs). The aim of this study was to determine French professionals' attitudes about the acceptability of PGD and PND for inherited predisposition to cancer. Methods A cross-sectional survey was performed, involving self-administered questionnaires mailed to all registered cancer geneticists (CGs; n = 123) and MPDTs (n = 47) in France. Results The response rates of CGs and MPDTs were 62% and 64%, respectively; 59% and 50% of the CGs had at least discussed PGD and PND, respectively, with their consultees during the previous year. When severe cancer is liable to occur in childhood with a high penetrance and no effective methods of prevention/treatment exist, high rates of acceptability of PGD/PND were recorded (> 80%). When cancer is liable to occur before the age of 50 years but not in childhood and some form of prevention/treatment is available that preserves quality of life, PGD was rated as acceptable by one MPDT (3.3%) and 10 CGs (13.2%), and PND was rated acceptable by nine CGs (11.8%). Most respondents agreed that the acceptability of PND/PGD depends on patients' family history of cancer and their reproductive history. Conclusion With the most severe forms of inherited cancer, no differences were observed between the acceptability to practitioners of PND and PGD, but with late-onset syndromes, there is still much uncertainty. Guidelines would help to standardize the practices of professionals handling these reproductive issues.

Organised since 1990 in France, cancer genetics has been strengthened since 2003 by the programme "Plan Cancer" which resulted in an improvement of the organisation of activities. The aim of this review is to present an update of the estimation of the needs of the population in this field for the next ten years, provided by a group of experts mandated by the French National Cancer Institute. Identification and management of major hereditary predispositions to cancer have a major impact on decrease in mortality and incidence. Sensitivity of criteria for the detection of BRCA1/2 mutations could be substantially improved by enlarging the indication for genetic testing to isolated cases of ovarian cancer occurring before 70 years and to familial cases occurring after this age limit. In the Lynch syndrome, the present criteria would have an excellent sensitivity for the detection of mutations in the mismatch repair (MMR) genes if the pre-screening of tumours on microsatellite instability (MSI) phenotype was effective, but these criteria are actually poorly applied. However, genetic testing should not be proposed to all the patients affected by tumours belonging to the spectrum of major predispositions and a fortiori to unaffected persons unless an affected relative has been identified as a carrier. The prescription of tests should continue to be strictly controlled and organised, in patients as well as in at-risk relatives. The enlargement of criteria and the improvement in the spreading of recommendations should result in an increase of genetic counselling activity and of the prescriptions of tests by a factor 2 to 4, and to a lesser extent in the clinical management of at risk persons. In a near future, it appears important to mandate experts on specific issues such as the determinants of the lack of effective application of tumour screening for MSI phenotype, the recommendations for the identification and the management of MYH-associated polyposis, or the predictive value of tumour characteristics for the identification of BRCA1/2 mutations. The expected increase in cancer genetics activity will need an optimal organisation to increase the throughput. Such measures will help in facing up to new predispositions that will probably be identified in common cancers.

Objective: BRCA1/2 gene mutations are not frequently identified in breast or ovarian cancer patients who are the first members of their family to be tested. Little is known about how probands interpret and cope with these results, which are generally referred to as ‘inconclusive’. The aim of this study was to describe subjective understanding by women with cancer in response to an inconclusive BRCA1/2 test, describing the difficulties or non-difficulties they encountered about the transmission of information to their family. Methods: A cohort of 30 women with breast/ovarian cancer were followed for a period of up to 2 years after delivery of their inconclusive genetic test results. Self-administered questionnaires with closed and open questions were distributed. A qualitative analysis of open-ended questions is presented here. Results: These women's reactions to inconclusive results were of three kinds. The majority (n=14) were still uncertain about their carrier status, which is an adequate medical interpretation of the results, while others (n=9) took their inconclusive results to mean that they were definitely not carriers, and the women in the last group (n=7) were convinced that they were actually carriers. There was some overlap between these perceptions and actual genetic risk. Conclusions: The transmission of information to the family was found to differ qualitatively across the three groups and more difficulties in this respect were expressed by those who were uncertain about their carrier status. Copyright © 2008 John Wiley & Sons, Ltd.

L’objectif de cette etude etait de comparer les attitudes theoriques par rapport a la participation ou non a un essai randomise controle (ERC) de trois groupes comparables de patientes suivies prospectivement (cancer du sein non metastatique traite par chimiotherapie standard): ayant eu une proposition de participer a un ERC (201 acceptations, 66 refus) ou pas (n = 188). Le refus de participer semble etre une decision personnelle, alors que le souhait reflete davantage l’approbation de la proposition du medecin. Lors de la proposition de participation, les medecins doivent faire face a une aversion envers le procede de randomisation et discuter abondamment des raisons et de l’importance de la randomisation ainsi que de tous les aspects de la participation a un ERC afin de transmettre aux patients toute l’information necessaire pour prendre une decision informee.

Purpose: To assess how general practitioners (GPs) from European countries prioritized their genetic educational needs according to their geographic, sociodemographic, and educational characteristics. Methods: Cross-sectional survey, random and total samples of GPs in five European countries (France, Germany, the Netherlands, Sweden, and United Kingdom), mailed questionnaires; Outcome: Genetic Educational Priority Scale (30 items; six subscores). Results: A total 1168 GPs answered. Priorities differed (P < 0.001) but were consistently ranked across the countries. Previous education had a marginal effect on priorities. Women gave higher priorities than men to Genetics of Common Disorders (adjusted odds ratio [ORadj], 2.5; 95% confidence interval [CI], 1.6-3.8), Psychosocial and Counseling Issues (ORadj, 1.6(adj); 95% CI, 1.1-2.5), and Ethical, Legal, and Public Health Issues (ORadj, 1.3; 95% CI, 1.1-1.8), but lower than men to Techniques and Innovation in Genetics (ORadj, 0.7; 95% CI, 0.5-0.9). Older physicians gave higher priorities to Basic Genetics and Congenital Malformations (ORadj, 1.5; 95% CI, 1.1-1.9), and to Techniques and Innovation in Genetics (ORadj: 1.3; 95% CI, 1.0-1.7), compared with their younger colleagues. Conclusions: Expressed genetic educational needs vary according to the countries and sociodemographics. In accordance, training could be more focused on genetics of common disorders and on how to approach genetic risk in clinical practice rather than on ethics, hew technologies, or basic concepts. (Less)

Purpose: A scale assessing primary care physicians' priorities for genetic education (The Gen-EP scale) was developed and tested in five European countries. The objective of this study was to determine its factor structure, to test scaling assumptions and to determine internal consistency. Methods: The sample consisted of 3686 practitioners (general practitioners, gyneco-obstetricians, pediatricians) sampled in France, Germany, the Netherlands, Sweden, and United Kingdom. We first determined the factor structure of the Gen-EP scale (30 items) on the whole sample. Scaling assumptions were then tested on each country using multitrait scaling analysis. Internal consistency was assessed across the five countries. Results: Six factors were identified accounting for 63.3% of the variance of the items. They represented the following priorities for genetic education: "Genetics of Common Diseases"; "Ethical, Legal, and Public Health Issues"; "Approaching Genetic Risk Assessment in Clinical Practice"; "Basic Genetics and Congenital Malformations"; "Techniques and Innovation in Genetics" and "Psychosocial and Counseling Issues." In each country, convergent and discriminant validity were satisfactory. Internal-consistency reliability coefficients (Cronbach's alpha) were all above the acceptable threshold (0.70). Conclusion: The Gen-EP scale could be a helpful instrument in different countries to organize and evaluate the impact of genetic educational programs for primary care providers. (Less)

The aim of this study was to measure women's preferences about decision-making and their impact to participate or not to a hypothetical randomised controlled trial (RCT).We surveyed prospectively breast cancer patients invited to participate in a clinical RCT (group 1a=201 acceptances, group 1b=66 refusals) or not invited (group 2=188). All women had the same treatment.Decision-making preferences of patients who had refused clinical RCT entry were more patient's centred (72.3%) compared to those of patients who accepted (35.0%, P0.001). Altruism was not a significant determinant of patients' participation. Randomisation was considered acceptable in 52.0% (group 1a) compared to 16.9% and 21.1% for group 1b or group 2, respectively (P0.001). It was the main predictor of willingness to participate in a hypothetical RCT (adjusted odds ratio (OR(adj)) 4.6; 95% confidence interval [2.7-7.7]; P0.001) with the patient group allocation (OR(adj) group 1a=5.0 [2.9-8.7]; group 1b=0.2 [0.0-0.8]; group 2=1 [referent]; P0.001). After multivariate adjustment, willingness to participate was also significantly related with medical decision-making preferences (OR(adj) 2.2 [1.0-4.9]; P=0.045), with the feeling of being unable to refuse a doctor's proposal (OR(adj) 1.8 [1.1-3.2]; P=0.031), and with satisfaction with doctors' communication (OR(adj) 3.1 [1.5-7.8]; P0.001).Patients' acceptance to participate in a RCT is preferred to be doctor's decision, whereas refusal is a personal one. When proposing a RCT, doctors must deal with patients' a priori negative feelings about randomisation. They should thoroughly discuss the reasons for and importance of randomisation as well as the other aspects of participating in the trial in order to give patients all of the information they need to make an informed decision.

Familial cancer services have been developed in many countries in response to a rapidly evolving demand for genetic counseling and testing for breast cancer risk. This article presents a synthesis of the literature on international aspects of genetic counseling and testing and discusses similarities and differences in the provision of genetic counseling and testing, taking seven countries with well established familial cancer services as a case study (Australia, Canada, France, Germany, Netherlands, UK and US). Potential international differences are discussed in terms of: provider and patient attitudes to genetic counseling and genetic testing; utilization rates of genetic testing and prophylactic surgery; and the psychological impact of genetic testing for breast cancer risk. The comparative analyses of utilization rates and the psychological impact of testing indicate a wide range of variability in uptake rates and psychological outcomes, most likely reflecting sample variability and methodological differences in measurement. International comparison studies using controlled designs would be required to ascertain whether international differences exist, and to disentangle the differential role of clinical, individual and family context factors, on the one hand, and the cultural and health system-related factors unique to particular countries, on the other.

Purpose Cancer patients participating in randomized controlled trials (RCTs) have not been found to have better clinical outcomes than other patients. Our objective was to assess the impact of RCTs on patients' satisfaction with care. Patients and Methods A prospective study was carried out in a cohort of women with breast cancer (N = 455) divided into those invited to participate in an RCT (201 acceptances, 66 refusals) and a comparable control group not invited to participate (n = 188). All the patients underwent the same treatment (fluorouracil, epirubicin, and cyclophosphamide 100 mg/m2 for six cycles). One and 7 months after the beginning of chemotherapy, self-administered satisfaction scores were used to compare the women's assessment of their care (Comprehensive Assessment of Satisfaction with Care validated scale). Results At the beginning of chemotherapy, women to whom RCT had been proposed rated the doctors' availability (average ± standard deviation [SD]: RCT acceptance group, 3.60 ± 0.78; RCT refusal group, 3.68 ± 0.87; control group, 3.41 ± 0.82; P ≤ .02) and the doctors' communication (average ± SD: RCT acceptance group, 3.56 ± 0.88; RCT refusal group, 3.67 ± 0.88; control group, 3.39 ± 0.84; P ≤ .05) higher than those to whom the trial was not proposed. After the treatment, participants in the RCT felt that their doctor was more supportive (average ± SD: RCT acceptance group, 3.04 ± 0.92; control group, 2.77 ± 0.85; P = .005) and more informative about their illness and treatment (average ± SD: RCT acceptance group, 3.34 ± 0.88; control group, 3.08 ± 0.92; P = .006) than those in the control group. The general level of satisfaction was also higher in the RCT acceptance group. Conclusion Women participating in an RCT have a more positive picture of their doctors' care than others, probably because of the structural effects of the informed consent and data collection processes.

Julian-Reynier Claire. Prédire sans médire : l'embarras médical face aux mauvaises nouvelles (Commentaire). In: Sciences sociales et santé. Volume 25, n°1, 2007. pp. 55-61.

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 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.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.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'.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.

International audience; 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.

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.

International audience; 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.

Collaborative forms of work such as extended networks, expert groups, and consortia increasingly structure biomedical activities. They are particularly prominent in the cancer field, where procedures such as multicenter clinical trials have been instrumental in establishing the specialty of oncology, and subfields such as cancer genetics, where bioclinical activities—for example, testing for breast and ovarian cancer (BRCA) genes and follow-up interventions—are predicated on the articulation of a number of tasks performed by new clinical collectives. In this article, we examine the founding and development of a French bioclinical collective—the Groupe Génétique et Cancer (GGC)—that coordinates and structures the activities of most French actors in cancer genetics and operates simultaneously in the clinical, research, and regulatory domains. To examine the group’s structure and dynamics, the article combines information gathered through traditional fieldwork methods with information elicited from a coauthorship and semantic-network analysis of the publications of GGC members from 1969 to 2001.

Background: Misunderstanding of cancer screening recommendations or messages and confidence in the predictive value of positive familial history of disease may converge to stimulate an over-utilization of screening tests in oncology by patients who perceive themselves to be at high risk. Methods: A survey looking for predictors of the uptake of five cancer screening tests (mammography, colonoscopy, Fecal Occult Blood Test, upper digestive tract endoscopy and chest X-ray) was carried out on 4000 healthy adults (mean age 46.4 years). Findings: Based on the results of a multivariate analysis, the survey enlightens the existing relationships between familial history and increasing uptake of medical cancer screening tests, with OR ranging from 1.3 (IC 1.0–1.6) for chest X-ray to 3.0 (IC 2.1–4.1) for colonoscopy In France (60 million inhabitants), a conservative assessment of the annual net number of unhelpful screening tests attributable to positive family history of related cancer with chest X-ray and Upper digestive tract endoscopy lead to a figure of 7000 and 7800 tests respectively corresponding to a total annual cost of more than € 7, million. Interpretation: Clearer messages about hereditary risks and transparency about the efficacy of screening tests are required in order to decrease over utilization of screening tests and their related costs.

La localisation et l’identification de deux genes de predisposition au cancer du sein et/ou de l’ovaire, BRCA1 et BRCA2, ont permis l’introduction dans les nouvelles pratiques cliniques, de tests biologiques de predisposition genetique destines aux personnes supposees a haut risque. La diffusion de ces nouvelles pratiques medicales et biologiques se fait avec les difficultes traditionnelles de toute activite innovante, auxquelles peuvent s’ajouter de fortes incertitudes relatives a la revendication de droits de propriete sur les genes et au financement des actes medicaux et biologiques. Dans ce contexte, l’evolution de l’offre de tests de predisposition genetique est analysee a travers deux enquetes realisees pour decrire les profils d’activite en 1998 et en 2001 de l’ensemble des acteurs medicaux impliques en France dans ces nouvelles pratiques : les medecins assurant les consultations d’oncologie genetique, les centres ou ont lieu ces consultations specialisees et les laboratoires associes realisant les analyses de biologie moleculaire.

Post-mastectomy breast reconstruction represents a surgical option that may improve psychosocial outcome without modifying patients' survival. Psychosocial impact of used surgical technique and moment of realization of breast reconstruction remains unclear. However, complications are negatively related to patients' satisfaction. There is no guideline for BR indications. Therefore, a review of clinical and cosmetic outcomes of different breast reconstruction modalities was necessary. It permitted to propose a shared decision-making algorithm for the choice of moment and technique of BR according to the presence of radiotherapy that appears to be the main risk factor of clinical outcome of breast reconstruction. It also disclosed some limits in information reliability about clinical outcome of particular associations of breast reconstruction and radiotherapy. Proportion of women pursuing breast reconstruction, and particularly immediate breast reconstruction, is rising. Clinical surveys assessing relation between radiotherapy and clinical and psychosocial outcome of breast reconstruction are urgently expected.

PURPOSE French guidelines recommended the treatment of locally advanced rectal cancers. Our aim was first to describe therapeutic decision of digestive surgeons related to clinical cases and then to measure their knowledge of french guidelines. METHODS Two vignettes were mailed to 183 french surgeons, randomly selected. The first one dealt with a man, 46-years-old, with a rectal cancer T3N0M0. The second one dealt with a woman, 50-years-old, with a rectal cancer complicated by a rectovaginal fistula. Questions covered the decision modality and the therapeutic choice. RESULTS We received back 124 responses (67%). The decision modality was multidisciplinary for half of the surgeons. For the former case, the therapeutic choice fits with guidelines--radiotherapy followed by conservative surgery--for 69% of surgeons. For the latter case, more than half of the surgeons chose an association of radiotherapy-surgery-chemotherapy. Age appeared to be a limiting factor for a curative surgery. Surgeons therapeutics attitudes meet with changes in practice already observed in 1990, but 1/3 of surgeons still did not follow the guidelines. Chemotherapy was chosen while its efficacy has not been demonstrated. CONCLUSION There is few overlapping between attitudes, and optimal surgical practices. Quality of surgery, in the art of debate, may improve thanks to the rulemaking of therapeutic decisions and thanks to the evolution of the state-of-the-art among multidisciplinary committees or professional networks.

Background: In 1994/95, two genes, BRCA1/2, associated with a predisposition to breast or ovarian cancer were identified. Genetic testing of deleterious BRCA1/2 mutations consequently can be proposed to individuals with a family history of breast or ovarian cancer to identify who is at risk. The granting of U.S. patents on BRCA1/2 to a privately owned company has led to the monopoly use of a unique technique (Direct Sequencing of the gene, DS) for BRCA1/2 testing in this country. Alternative strategies using prescreening techniques, however, have been experienced worldwide.Methods: On the basis of data collected at three laboratories of French public hospitals, we carried out a cost-effectiveness study comparing DS to 19 alternative strategies with the number of deleterious BRCA1 mutations detected as the outcome.Results: Results show that the DS strategy presents the highest average cost per mutation detected (9,882.5 °) and that there exist strategies using prescreening techniques that can reach similar effectiveness while reducing total costs. Moreover, other strategies can obtain a four- to sevenfold reduction in the average cost per mutation detected as soon as some rates of false negatives (2% to 13%) are deemed to be acceptable.Conclusions: Results suggest that gene patents with a very broad scope, covering all potential medical applications, may prevent health care systems from identifying and adopting the most efficient genetic testing strategies due to the monopoly granted for the exploitation of the gene. Policy implications for regulatory authorities, in the current context of the extension of BRCA1/2 patents in other countries, are discussed.