Claire Julian-reynier - Academia.edu (original) (raw)
Papers by Claire Julian-reynier
Familial Cancer, 2000
In 2004 the NICE guidelines on familial breast cancer advised Health Care Professionals that they... more In 2004 the NICE guidelines on familial breast cancer advised Health Care Professionals that they should not actively seek to identify women with a family history of breast cancer. We have carried out a review of the evidence base and a large scale questionnaire survey of health professionals in four European countries. There is overwhelming support amongst GPs and surgeons
Revue d Épidémiologie et de Santé Publique
Genetics in medicine: official journal of the American College of Medical Genetics
To assess how general practitioners (GPs) from European countries prioritized their genetic educa... more To assess how general practitioners (GPs) from European countries prioritized their genetic educational needs according to their geographic, sociodemographic, and educational characteristics. 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). 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 [OR adj], 2.5; 95% confidence interval [CI], 1.6-3.8), Psychosocial and Counseling Issues (OR adj, 1.6; 95% CI, 1.1-2.5), and Ethical, Legal, and Public Health Issues (OR adj, 1.3; 95% CI, 1.1-1.8), but lower than men to Techniques and Innovation in Genetics (OR adj, 0.7; 95% CI, 0.5-0.9). Older physici...
Revue d'Épidémiologie et de Santé Publique, 2004
BMC Cancer, 2015
Background: No information is available on the attitudes of General Practitioners (GPs) and Breas... more 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.
Leukemia research, Jan 26, 2015
Myelodysplastic syndromes (MDS) are heterogeneous hematopoietic malignancies, often poorly unders... more 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 ...
Bulletin du cancer, 2014
Genetic tests in families with a mutation related to breast and ovarian cancers (BRCA1/2) are now... more 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 ...
![Research paper thumbnail of [Cancer genetics: estimation of the needs of the population in France for the next ten years]](https://attachments.academia-assets.com/44803928/thumbnails/1.jpg)
](Bulletin du cancer, 2009
Organised since 1990 in France, cancer genetics has been strengthened since 2003 by the programme... more 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 i...
Familial cancer, 2001
Evidence-based counseling and prevention are not available so far for hereditary cancer prone per... more Evidence-based counseling and prevention are not available so far for hereditary cancer prone persons, since we lack data based on clinical trials. There are very few high-risk persons in the population as a whole. Based on a familial history analysis, only 1.2% of all healthy volunteers attending screening centers reached the arbitrary high-risk level defined as a Relative Risk of more than 4. We describe a randomized trial based on colonoscopic screening for colorectal cancer on a sub-group of high-risk group persons. Among the 77 members of the French Institutional Preventive Center Network, 37 took part in this protocol. During the first 3 years, 850,000 persons were interviewed at these 37 Health centers. The enrollment process was particularly time-consuming, since a large amount of information had to be delivered to the participants. The mean rate of recruitment of eligible candidates was far lower than predicted, averaging only 1.4 per 1,000 persons interviewed instead of th...
Familial cancer, 2001
Prophylactic surgery is a major issue for breast/ovarian cancer prone women. Bio-clinical data to... more Prophylactic surgery is a major issue for breast/ovarian cancer prone women. Bio-clinical data to help in the decision-making are not sufficient. In this context of uncertainty, physicians' and women's attitudes to prophylactic surgery is information of great value. The physicians' attitudes were assessed by a randomised national sample of practitioners involved in breast and ovarian cancer management. The patients' attitudes were appraised with a pre-consultation self- administered questionnaire presented during a one-year period to all women in five cancer genetic clinics chosen, for their representative geographical locations and their activity level. Consent to prophylactic surgery is higher among physicians than among patients (p < 0.0001). Acceptability of mastectomy is lower than that of oophorectomy in both patients and physicians (p < 0.0001 in both groups). In addition, age at which the intervention is proposed to be performed is a key determinant for...
Introduction.-En oncologie, la décision de participer à un essai thérapeutique randomisé est comp... more Introduction.-En oncologie, la décision de participer à un essai thérapeutique randomisé est complexe, et doit être prise rapidement quand il s'agit de débuter incessamment un traitement adjuvant. Notre objectif était d'identifier les facteurs associés au regret à long terme d'avoir participé à un essai randomisé, en étudiant plus particulièrement l'implication des patientes dans la prise de décision.
European Journal of Human Genetics, 2002
Breast carcinoma is the most common type of cancer affecting women in the Western world. The here... more Breast carcinoma is the most common type of cancer affecting women in the Western world. The hereditary forms, which amount from 5 to 10% of all the cases of breast cancer, mainly involve BRCA1 or BRCA2 mutations. Due to the diagnostic strategy used by the patent owner, Direct DNA sequencing (DS) may become the only BRCA1/2 test procedure available, although
Health Expectations, 2014
Although greater attention is currently being paid to participants in research, no studies have d... more 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. (i) To explore participants&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; 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. A qualitative study using semi-structured face-to-face interviews and a thematic analysis based on Grounded Theory methods. 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. 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; 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. Investigators should ascertain participants&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; expectations and preferences by consulting them before disclosing the results obtained. Although the disclosure process may not meet participants&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; expectations completely, consultation is the key to preventing them from having irrealistic expectations about the information they are going to receive.
Genetics in Medicine, 2014
This study aimed to measure patients&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;... more This study aimed to measure patients&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; smoking patterns for 5 years after BRCA1/2 test result disclosure. 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; smoking behaviors were performed using a zero-inflated Poisson mixed model. 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. 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.
Community Genetics, 1999
The aim of this study was to determine what medical specialists knew about recent findings in the... more The aim of this study was to determine what medical specialists knew about recent findings in the genetics of breast/ovarian cancer, according to their speciality and the methods they used to keep themselves up to date. A national random sample of 1,169 surgeons and gynaeco-obstetricians was surveyed using a mailed questionnaire, to which 700 of those contacted responded (60%). Two years after it had been identified, BRCA1 was known by only 54% of the practitioners, whereas BRCA2 was known by 49.1% 1 year after it was first identified. The lifetime breast cancer risk of women in the general population was estimated by 37.6% of the participants to be between 6 and 10%, and 35.7% rated the penetrance of a breast cancer mutated gene at between 70 and 90%. After multivariate adjustment, the overall score for knowledge of hereditary breast/ovarian cancer was mainly determined as follows: by the speciality (p < 0.001), since the gynaeco-obstetricians scored the highest and the general surgeons the lowest; by the size of practice (p < 0.001), since a larger practice was associated with a higher score, and by whether or not the participants were accustomed to reading the international literature (p < 0.01). These results show the need for physicians who are not geneticists to acquire further knowledge about cancer genetics. We discuss the role of international reviews in communicating the latest knowledge available in genetics to specialists working in other medical fields.
Prenatal Diagnosis, 1994
More than 10 years after a chromosomal anomaly screening programme was set up in France for pregn... more More than 10 years after a chromosomal anomaly screening programme was set up in France for pregnant women of advanced age, amniocentesis is still a controversial issue. The reasons why eligible women did not utilize the test and whether or not the existence of social welfare coverage determined women's access to prenatal diagnosis were studied. A group of 291 women aged 235 years who recently gave birth to normal liveborns was interviewed by telephone. Among those aged 38 years and over, who automatically qualified for social security coverage, 75 per cent had undergone amniocentesis as opposed to 23 per cent in the 35 to 37-year-old non-covered age group who did not qualify for social security coverage. In both groups, access to amniocentesis was found to depend on the physicians', women's and male partners' attitudes towards prenatal diagnosis and abortion. Among the younger group, the uptake depended mainly on socio-economic factors. Institutional policies should ensure greater equality of access while allowing for individual preferences. KEY woms-Amniocentesis, maternal age, social preferences, inequities in health care.
British Journal of Cancer, 2010
BACKGROUND: Participants are showing great interest these days in obtaining the results of clinic... more BACKGROUND: Participants are showing great interest these days in obtaining the results of clinical trials. The aim of this study was to assess patients' uptake and understanding of the results of the trial in which they have participated and the impact of a letter offering patients the possibility of consulting the trial results on a specific website. METHODS: Breast cancer patients participating in a trial on the efficacy of Trastuzumab were randomly subdivided into an Internet group (who received the letter of invitation) and a control group (who did not receive it). Among 115 HER2-positive women from 21 centres, 107 (93%) answered a self-administered questionnaire. RESULTS: Most of the patients in both groups had access to the Internet (72.0%). The majority (97.2%) stated that receiving information about the trial results would be useful, and the oncologist was the most frequently preferred information provider. The Internet group's declared uptake of the trial results was only slightly higher (47.1% vs 33.9%; P ¼ 0.166); however, they understood the results significantly more accurately (18.8% vs 5.6%; P ¼ 0.039). INTERPRETATION: Although Internet was not the respondents' preferred source of information, the possibility of using this source slightly increased the uptake and understanding of the results.
Oncologie, 2008
Résumé L’objectif de cette étude était de comparer les attitudes théoriques par rapport à la par... more Résumé L’objectif de cette étude était de comparer les attitudes théoriques par rapport à la participation ou non à un essai randomisé contrôlé (ERC) de trois groupes comparables de patientes suivies prospectivement (cancer du sein non métastatique traité par chimiothérapie standard): ayant eu une proposition de participer à un ERC (201 acceptations, 66 refus) ou pas (n = 188). Le refus
Quality of Life Research, 2006
The Decisional Conflict Scale (DCS, 16 items, 5 dimensions) designed to measure the level of deci... more The Decisional Conflict Scale (DCS, 16 items, 5 dimensions) designed to measure the level of decisional conflict experienced by patients making health care decisions has not yet been validated in French. Methods: A national sample of French cancer patients (n=644) facing the decision to undergo BRCA genetic testing was tested for this purpose, including a control group and an experimental group who had received an information booklet. Reliability and criterion validity were investigated. To check the validity of the factors selected, an exploratory factor analysis was then conducted, followed by confirmatory factor analyses. Results: Reliability was satisfactory (a ¼ 0:913). Women who definitely wanted to undergo genetic testing showed significantly lower DCS scores than uncertain women (p<0.001). Exploratory factor analysis suggested an optimal 4-dimensional model. In the control group, confirmatory factor analyses showed that the French model was more accurate than the original one. When the decisionmaking conflicts decreased (in the experimental group), both models yielded only fairly accurate indices. Conclusion: The French version of the DCS was found to give a reliable overall score. However, special care should be taken when using the individual subscores. In addition, it is necessary to take into account the context in which the decision-making occurs.
Community Genetics, 2003
To conduct a survey in seven European cancer genetics centres to compare service provision, organ... more To conduct a survey in seven European cancer genetics centres to compare service provision, organisation and practices for familial breast and colon cancer consultations and testing. Information was obtained on aspects of services both nationally and locally. A detailed survey questionnaire was adapted collaboratively to obtain the required information. Initial survey data were collected within each centre and interim results were discussed at two European Workshops. Where differences in practice existed, details were clarified to ensure accuracy and adequacy of information. Participating centres were Haifa (Israel), Hannover (Germany), Leiden (The Netherlands), Leuven (Belgium), Manchester (UK), Marseille (France) and Milan (Italy), representing countries with populations ranging from 6.5 to 80 million. The European countries diverged in regard to the number of cancer genetics centres nationally (from 8 in Belgium to 37 in France), and the average population served by each centre (from 0.59 million in Israel to 3.32 million in Italy). All centres offered free care at the point of access, but referral to specialist care varied according to national health care provision. At a centre level, staff roles varied due to differences in training and health care provision. The annual number of counsellees seen in each participating centre ranged from 200 to over 1,700. Access to breast surveillance or bowel screening varied between countries, again reflecting differences in medical care pathways. These countries converged in regard to the wide availability of professional bodies and published guidelines promoting aspects of service provision. Similarities between centres included provision of a multidisciplinary team, with access to psychological support, albeit with varying degrees of integration. All services were dominated (70-90%) by referrals from families with an increased risk of breast cancer despite wide variation in referral patterns. Collection of pedigree data and risk assessment strategies were broadly similar, and centres used comparable genetic testing protocols. Average consultation times ranged between 45 and 90 min. All centres had access to a laboratory offering DNA testing for breast and bowel cancer-predisposing genes, although testing rates varied, reflecting the stage of service development and the type of population. Israel offered the highest number of genetic tests for breast cancer susceptibility because of the existence of specific founder mutations, in part explaining why the cancer genetics service in Haifa differed most from the other six. Despite considerable differences in service organisation, there were broad similarities in the provision of cancer genetic services in the centres surveyed.
Familial Cancer, 2000
In 2004 the NICE guidelines on familial breast cancer advised Health Care Professionals that they... more In 2004 the NICE guidelines on familial breast cancer advised Health Care Professionals that they should not actively seek to identify women with a family history of breast cancer. We have carried out a review of the evidence base and a large scale questionnaire survey of health professionals in four European countries. There is overwhelming support amongst GPs and surgeons
Revue d Épidémiologie et de Santé Publique
Genetics in medicine: official journal of the American College of Medical Genetics
To assess how general practitioners (GPs) from European countries prioritized their genetic educa... more To assess how general practitioners (GPs) from European countries prioritized their genetic educational needs according to their geographic, sociodemographic, and educational characteristics. 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). 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 [OR adj], 2.5; 95% confidence interval [CI], 1.6-3.8), Psychosocial and Counseling Issues (OR adj, 1.6; 95% CI, 1.1-2.5), and Ethical, Legal, and Public Health Issues (OR adj, 1.3; 95% CI, 1.1-1.8), but lower than men to Techniques and Innovation in Genetics (OR adj, 0.7; 95% CI, 0.5-0.9). Older physici...
Revue d'Épidémiologie et de Santé Publique, 2004
BMC Cancer, 2015
Background: No information is available on the attitudes of General Practitioners (GPs) and Breas... more 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.
Leukemia research, Jan 26, 2015
Myelodysplastic syndromes (MDS) are heterogeneous hematopoietic malignancies, often poorly unders... more 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 ...
Bulletin du cancer, 2014
Genetic tests in families with a mutation related to breast and ovarian cancers (BRCA1/2) are now... more 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 ...
Bulletin du cancer, 2009
Organised since 1990 in France, cancer genetics has been strengthened since 2003 by the programme... more 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 i...
Familial cancer, 2001
Evidence-based counseling and prevention are not available so far for hereditary cancer prone per... more Evidence-based counseling and prevention are not available so far for hereditary cancer prone persons, since we lack data based on clinical trials. There are very few high-risk persons in the population as a whole. Based on a familial history analysis, only 1.2% of all healthy volunteers attending screening centers reached the arbitrary high-risk level defined as a Relative Risk of more than 4. We describe a randomized trial based on colonoscopic screening for colorectal cancer on a sub-group of high-risk group persons. Among the 77 members of the French Institutional Preventive Center Network, 37 took part in this protocol. During the first 3 years, 850,000 persons were interviewed at these 37 Health centers. The enrollment process was particularly time-consuming, since a large amount of information had to be delivered to the participants. The mean rate of recruitment of eligible candidates was far lower than predicted, averaging only 1.4 per 1,000 persons interviewed instead of th...
Familial cancer, 2001
Prophylactic surgery is a major issue for breast/ovarian cancer prone women. Bio-clinical data to... more Prophylactic surgery is a major issue for breast/ovarian cancer prone women. Bio-clinical data to help in the decision-making are not sufficient. In this context of uncertainty, physicians' and women's attitudes to prophylactic surgery is information of great value. The physicians' attitudes were assessed by a randomised national sample of practitioners involved in breast and ovarian cancer management. The patients' attitudes were appraised with a pre-consultation self- administered questionnaire presented during a one-year period to all women in five cancer genetic clinics chosen, for their representative geographical locations and their activity level. Consent to prophylactic surgery is higher among physicians than among patients (p < 0.0001). Acceptability of mastectomy is lower than that of oophorectomy in both patients and physicians (p < 0.0001 in both groups). In addition, age at which the intervention is proposed to be performed is a key determinant for...
Introduction.-En oncologie, la décision de participer à un essai thérapeutique randomisé est comp... more Introduction.-En oncologie, la décision de participer à un essai thérapeutique randomisé est complexe, et doit être prise rapidement quand il s'agit de débuter incessamment un traitement adjuvant. Notre objectif était d'identifier les facteurs associés au regret à long terme d'avoir participé à un essai randomisé, en étudiant plus particulièrement l'implication des patientes dans la prise de décision.
European Journal of Human Genetics, 2002
Breast carcinoma is the most common type of cancer affecting women in the Western world. The here... more Breast carcinoma is the most common type of cancer affecting women in the Western world. The hereditary forms, which amount from 5 to 10% of all the cases of breast cancer, mainly involve BRCA1 or BRCA2 mutations. Due to the diagnostic strategy used by the patent owner, Direct DNA sequencing (DS) may become the only BRCA1/2 test procedure available, although
Health Expectations, 2014
Although greater attention is currently being paid to participants in research, no studies have d... more 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. (i) To explore participants&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; 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. A qualitative study using semi-structured face-to-face interviews and a thematic analysis based on Grounded Theory methods. 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. 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; 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. Investigators should ascertain participants&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; expectations and preferences by consulting them before disclosing the results obtained. Although the disclosure process may not meet participants&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; expectations completely, consultation is the key to preventing them from having irrealistic expectations about the information they are going to receive.
Genetics in Medicine, 2014
This study aimed to measure patients&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;... more This study aimed to measure patients&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; smoking patterns for 5 years after BRCA1/2 test result disclosure. 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; smoking behaviors were performed using a zero-inflated Poisson mixed model. 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. 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.
Community Genetics, 1999
The aim of this study was to determine what medical specialists knew about recent findings in the... more The aim of this study was to determine what medical specialists knew about recent findings in the genetics of breast/ovarian cancer, according to their speciality and the methods they used to keep themselves up to date. A national random sample of 1,169 surgeons and gynaeco-obstetricians was surveyed using a mailed questionnaire, to which 700 of those contacted responded (60%). Two years after it had been identified, BRCA1 was known by only 54% of the practitioners, whereas BRCA2 was known by 49.1% 1 year after it was first identified. The lifetime breast cancer risk of women in the general population was estimated by 37.6% of the participants to be between 6 and 10%, and 35.7% rated the penetrance of a breast cancer mutated gene at between 70 and 90%. After multivariate adjustment, the overall score for knowledge of hereditary breast/ovarian cancer was mainly determined as follows: by the speciality (p < 0.001), since the gynaeco-obstetricians scored the highest and the general surgeons the lowest; by the size of practice (p < 0.001), since a larger practice was associated with a higher score, and by whether or not the participants were accustomed to reading the international literature (p < 0.01). These results show the need for physicians who are not geneticists to acquire further knowledge about cancer genetics. We discuss the role of international reviews in communicating the latest knowledge available in genetics to specialists working in other medical fields.
Prenatal Diagnosis, 1994
More than 10 years after a chromosomal anomaly screening programme was set up in France for pregn... more More than 10 years after a chromosomal anomaly screening programme was set up in France for pregnant women of advanced age, amniocentesis is still a controversial issue. The reasons why eligible women did not utilize the test and whether or not the existence of social welfare coverage determined women's access to prenatal diagnosis were studied. A group of 291 women aged 235 years who recently gave birth to normal liveborns was interviewed by telephone. Among those aged 38 years and over, who automatically qualified for social security coverage, 75 per cent had undergone amniocentesis as opposed to 23 per cent in the 35 to 37-year-old non-covered age group who did not qualify for social security coverage. In both groups, access to amniocentesis was found to depend on the physicians', women's and male partners' attitudes towards prenatal diagnosis and abortion. Among the younger group, the uptake depended mainly on socio-economic factors. Institutional policies should ensure greater equality of access while allowing for individual preferences. KEY woms-Amniocentesis, maternal age, social preferences, inequities in health care.
British Journal of Cancer, 2010
BACKGROUND: Participants are showing great interest these days in obtaining the results of clinic... more BACKGROUND: Participants are showing great interest these days in obtaining the results of clinical trials. The aim of this study was to assess patients' uptake and understanding of the results of the trial in which they have participated and the impact of a letter offering patients the possibility of consulting the trial results on a specific website. METHODS: Breast cancer patients participating in a trial on the efficacy of Trastuzumab were randomly subdivided into an Internet group (who received the letter of invitation) and a control group (who did not receive it). Among 115 HER2-positive women from 21 centres, 107 (93%) answered a self-administered questionnaire. RESULTS: Most of the patients in both groups had access to the Internet (72.0%). The majority (97.2%) stated that receiving information about the trial results would be useful, and the oncologist was the most frequently preferred information provider. The Internet group's declared uptake of the trial results was only slightly higher (47.1% vs 33.9%; P ¼ 0.166); however, they understood the results significantly more accurately (18.8% vs 5.6%; P ¼ 0.039). INTERPRETATION: Although Internet was not the respondents' preferred source of information, the possibility of using this source slightly increased the uptake and understanding of the results.
Oncologie, 2008
Résumé L’objectif de cette étude était de comparer les attitudes théoriques par rapport à la par... more Résumé L’objectif de cette étude était de comparer les attitudes théoriques par rapport à la participation ou non à un essai randomisé contrôlé (ERC) de trois groupes comparables de patientes suivies prospectivement (cancer du sein non métastatique traité par chimiothérapie standard): ayant eu une proposition de participer à un ERC (201 acceptations, 66 refus) ou pas (n = 188). Le refus
Quality of Life Research, 2006
The Decisional Conflict Scale (DCS, 16 items, 5 dimensions) designed to measure the level of deci... more The Decisional Conflict Scale (DCS, 16 items, 5 dimensions) designed to measure the level of decisional conflict experienced by patients making health care decisions has not yet been validated in French. Methods: A national sample of French cancer patients (n=644) facing the decision to undergo BRCA genetic testing was tested for this purpose, including a control group and an experimental group who had received an information booklet. Reliability and criterion validity were investigated. To check the validity of the factors selected, an exploratory factor analysis was then conducted, followed by confirmatory factor analyses. Results: Reliability was satisfactory (a ¼ 0:913). Women who definitely wanted to undergo genetic testing showed significantly lower DCS scores than uncertain women (p<0.001). Exploratory factor analysis suggested an optimal 4-dimensional model. In the control group, confirmatory factor analyses showed that the French model was more accurate than the original one. When the decisionmaking conflicts decreased (in the experimental group), both models yielded only fairly accurate indices. Conclusion: The French version of the DCS was found to give a reliable overall score. However, special care should be taken when using the individual subscores. In addition, it is necessary to take into account the context in which the decision-making occurs.
Community Genetics, 2003
To conduct a survey in seven European cancer genetics centres to compare service provision, organ... more To conduct a survey in seven European cancer genetics centres to compare service provision, organisation and practices for familial breast and colon cancer consultations and testing. Information was obtained on aspects of services both nationally and locally. A detailed survey questionnaire was adapted collaboratively to obtain the required information. Initial survey data were collected within each centre and interim results were discussed at two European Workshops. Where differences in practice existed, details were clarified to ensure accuracy and adequacy of information. Participating centres were Haifa (Israel), Hannover (Germany), Leiden (The Netherlands), Leuven (Belgium), Manchester (UK), Marseille (France) and Milan (Italy), representing countries with populations ranging from 6.5 to 80 million. The European countries diverged in regard to the number of cancer genetics centres nationally (from 8 in Belgium to 37 in France), and the average population served by each centre (from 0.59 million in Israel to 3.32 million in Italy). All centres offered free care at the point of access, but referral to specialist care varied according to national health care provision. At a centre level, staff roles varied due to differences in training and health care provision. The annual number of counsellees seen in each participating centre ranged from 200 to over 1,700. Access to breast surveillance or bowel screening varied between countries, again reflecting differences in medical care pathways. These countries converged in regard to the wide availability of professional bodies and published guidelines promoting aspects of service provision. Similarities between centres included provision of a multidisciplinary team, with access to psychological support, albeit with varying degrees of integration. All services were dominated (70-90%) by referrals from families with an increased risk of breast cancer despite wide variation in referral patterns. Collection of pedigree data and risk assessment strategies were broadly similar, and centres used comparable genetic testing protocols. Average consultation times ranged between 45 and 90 min. All centres had access to a laboratory offering DNA testing for breast and bowel cancer-predisposing genes, although testing rates varied, reflecting the stage of service development and the type of population. Israel offered the highest number of genetic tests for breast cancer susceptibility because of the existence of specific founder mutations, in part explaining why the cancer genetics service in Haifa differed most from the other six. Despite considerable differences in service organisation, there were broad similarities in the provision of cancer genetic services in the centres surveyed.