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1.
Psychol Health Med ; 25(6): 756-766, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-31505944

RESUMEN

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


Asunto(s)
Revelación , Síndrome de Cáncer de Mama y Ovario Hereditario/genética , Mutación , Padres , Adolescente , Adulto , Hijos Adultos , Anciano , Niño , Estudios de Cohortes , Femenino , Francia , Genes BRCA1 , Genes BRCA2 , Pruebas Genéticas , Humanos , Masculino , Persona de Mediana Edad , Ovariectomía , Mastectomía Profiláctica , Procedimientos Quirúrgicos Profilácticos , Factores Sexuales , Adulto Joven
2.
Psychooncology ; 28(9): 1894-1900, 2019 09.
Artículo en Inglés | MEDLINE | ID: mdl-31276266

RESUMEN

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.


Asunto(s)
Hijos Adultos/psicología , Neoplasias de la Mama/genética , Genes BRCA1 , Genes BRCA2 , Asesoramiento Genético/estadística & datos numéricos , Aceptación de la Atención de Salud/psicología , Adolescente , Adulto , Hijos Adultos/estadística & datos numéricos , Anciano , Femenino , Francia , Heterocigoto , Humanos , Masculino , Persona de Mediana Edad , Mutación , Autoinforme , Adulto Joven
3.
Health Expect ; 19(5): 1023-35, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-26205609

RESUMEN

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


Asunto(s)
Neoplasias de la Mama/genética , Neoplasias de la Mama/prevención & control , Neoplasias de la Mama/psicología , Revelación , Conductas Relacionadas con la Salud , Satisfacción del Paciente , Escolaridad , Femenino , Francia , Genes BRCA1 , Genes BRCA2 , Predisposición Genética a la Enfermedad , Pruebas Genéticas , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios
4.
Genet Med ; 17(2): 117-24, 2015 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-25010056

RESUMEN

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.


Asunto(s)
Revelación , Genes BRCA1 , Genes BRCA2 , Pruebas Genéticas , Vigilancia en Salud Pública , Fumar , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Control de la Conducta , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/etiología , Femenino , Estudios de Seguimiento , Francia/epidemiología , Humanos , Persona de Mediana Edad , Neoplasias Ováricas/epidemiología , Neoplasias Ováricas/etiología , Estudios Prospectivos , Factores de Riesgo , Adulto Joven
5.
BMC Cancer ; 15: 243, 2015 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-25886583

RESUMEN

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


Asunto(s)
Neoplasias de la Mama/epidemiología , Médicos Generales , Comunicación en Salud , Cirujanos , Adulto , Femenino , Francia , Alemania , Humanos , Masculino , Persona de Mediana Edad , Países Bajos , Riesgo , Encuestas y Cuestionarios , Reino Unido
6.
Health Expect ; 18(6): 2425-36, 2015 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-24889689

RESUMEN

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


Asunto(s)
Neoplasias de la Mama/genética , Revelación , Predisposición Genética a la Enfermedad/psicología , Pruebas Genéticas , Encuestas y Cuestionarios , Adulto , Anciano , Neoplasias de la Mama/psicología , Femenino , Genes BRCA1 , Genes BRCA2 , Teoría Fundamentada , Humanos , Entrevistas como Asunto , Estudios Longitudinales , Persona de Mediana Edad , Mutación , Investigación Cualitativa , Medición de Riesgo
7.
Psychooncology ; 23(4): 420-7, 2014 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-24127257

RESUMEN

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


Asunto(s)
Consejo/estadística & datos numéricos , Depresión/terapia , Genes BRCA1 , Genes BRCA2 , Predisposición Genética a la Enfermedad/psicología , Pruebas Genéticas , Derivación y Consulta/estadística & datos numéricos , Estrés Psicológico/terapia , Adulto , Neoplasias de la Mama/genética , Neoplasias de la Mama/psicología , Estudios de Casos y Controles , Estudios de Cohortes , Depresión/psicología , Escolaridad , Femenino , Heterocigoto , Humanos , Modelos Logísticos , Persona de Mediana Edad , Análisis Multivariante , Oportunidad Relativa , Neoplasias Ováricas/genética , Neoplasias Ováricas/psicología , Estudios Prospectivos , Apoyo Social , Estrés Psicológico/psicología , Revelación de la Verdad
8.
Health Expect ; 17(4): 523-33, 2014 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-22512791

RESUMEN

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.


Asunto(s)
Bancos de Muestras Biológicas , Investigación Biomédica , Neoplasias/psicología , Pacientes/psicología , Donantes de Tejidos/psicología , Adulto , Anciano , Anciano de 80 o más Años , Altruismo , Femenino , Humanos , Masculino , Persona de Mediana Edad , Poder Psicológico , Investigación Cualitativa
9.
BMC Womens Health ; 13: 24, 2013 May 16.
Artículo en Inglés | MEDLINE | ID: mdl-23680028

RESUMEN

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


Asunto(s)
Imagen Corporal/psicología , Mama/anatomía & histología , Predisposición Genética a la Enfermedad/psicología , Psicometría/métodos , Adulto , Estudios de Cohortes , Femenino , Francia , Genes BRCA1 , Genes BRCA2 , Heterocigoto , Humanos , Persona de Mediana Edad , Mutación , Países Bajos , Reproducibilidad de los Resultados , Autoimagen , Encuestas y Cuestionarios , Traducción
10.
Genet Med ; 14(5): 527-34, 2012 May.
Artículo en Inglés | MEDLINE | ID: mdl-22241105

RESUMEN

PURPOSE: To assess the impact of BRCA1/2 test results on carriers' reproductive decision-making and the factors determining their theoretical intentions about preimplantation genetic diagnosis (PGD) and prenatal diagnosis (PND). METHODS: Unaffected BRCA1/2 mutation carriers of childbearing age (N = 605; 449 women; 151 men) were included at least 1 year after the disclosure of their test results in a cross-sectional survey nested in a national cohort. Multivariate adjustment was performed on the data obtained in self-administered questionnaires. RESULTS: Response rate was 81.0%. Overall, 32.5% and 50% said that they would undergo PGD/PND, respectively, at a theoretical next pregnancy, whereas only 12.1% found termination of pregnancy (TOP) acceptable. Theoretical intentions toward PGD did not depend on gender/age, but were higher among those with no future childbearing plans (adjusted odds ratio (AOR) 95% confidence interval (CI): 3.5 (1.9-6.4)) and those having fewer relatives with cancer (AOR 1.5 95% CI (1.0-2.3)). Greater TOP acceptability was observed among males and those with lower educational levels; 85.4% of respondents agreed that information about PGD/PND should be systematically delivered with the test results. CONCLUSIONS: The closer to reproductive decision-making BRCA1/2 carriers are, i.e., when they are more likely to be making future reproductive plans, the less frequently they intend to have PGD. Carriers' theoretical intentions toward PND are discussed further.


Asunto(s)
Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias de la Mama/genética , Heterocigoto , Diagnóstico Preimplantación/tendencias , Diagnóstico Prenatal/tendencias , Adolescente , Adulto , Anciano , Estudios de Cohortes , Toma de Decisiones , Femenino , Francia , Predisposición Genética a la Enfermedad/psicología , Pruebas Genéticas , Necesidades y Demandas de Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , Embarazo , Encuestas y Cuestionarios
11.
Clin Trials ; 9(1): 90-3, 2012 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-22049088

RESUMEN

BACKGROUND: One of the expected benefits of sharing trial results with participants is that it may enhance trust in medical researchers (TMRs). PURPOSE: In a prospective study on a sample of clinical trial participants, we investigated the effect on the participants' TMRs of providing final trial results to participants via the Internet. METHODS: Participants in the FNCLCC-PACS04 trial (ClinicalTrials.gov Identifier: NCT00054587) were surveyed on average 6 years after enrollment, when the trial results were available. In the current study, they were randomized to receive (experimental group) or not to receive (control group) a letter informing them that the results of the trial could be consulted on a specific website. TMRs was measured before randomization and 6 months later using mailed self-administered questionnaires. RESULTS: The response rate was 93% (N = 107). TMRs remained unchanged in the control group (mean effect size = -0.06, 95% confidence interval (CI): -0.28 to 0.17, p = 0.617) but decreased in the experimental group (-0.30, 95% CI: -0.53 to -0.06, p = 0.015). However, the difference between the two effect sizes was not statistically significant (p = 0.144). LIMITATIONS: The results obtained here on the disclosure of final trial results to breast cancer patients via the Internet cannot be generalized to all situations involving the disclosure of phase III randomized controlled trial results. CONCLUSIONS: Transparency is an ethical research requirement, but it may not enhance participants' TMRs.


Asunto(s)
Revelación/ética , Pacientes/psicología , Ensayos Clínicos Controlados Aleatorios como Asunto/ética , Investigadores/ética , Confianza , Femenino , Humanos , Persona de Mediana Edad , Estudios Prospectivos
12.
Med Sci (Paris) ; 28 Spec No 1: 28-32, 2012 Mar.
Artículo en Francés | MEDLINE | ID: mdl-22494654

RESUMEN

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.


Asunto(s)
Bancos de Muestras Biológicas , Investigación Biomédica , Neoplasias/patología , Pacientes/psicología , Percepción , Bancos de Muestras Biológicas/tendencias , Investigación Biomédica/métodos , Investigación Biomédica/tendencias , Humanos , Consentimiento Informado/psicología , Eliminación de Residuos Sanitarios/métodos , Neoplasias/psicología , Percepción/fisiología , Manejo de Especímenes/psicología
13.
Med Sci (Paris) ; 28 Spec No 1: 33-6, 2012 Mar.
Artículo en Francés | MEDLINE | ID: mdl-22494655

RESUMEN

Informing research participants of the results of clinical trials in which they were enrolled is in agreement with patients' rights and human dignity; such feedback is considered an ethical standard applied to clinical research. Cancer patients who participate in a clinical trial usually want to know the results. Here we analysed the literature about the different ways of disclosure of clinical trial results to participants, questioning their expectations and the meanings they give to the results. We describe some of the dilemma and intertwining between clinical care and clinical research. We highlight how the standardisation of sharing such results to participants could raise difficulties particularly for the relationship between doctor and patients.


Asunto(s)
Investigación Biomédica , Ensayos Clínicos como Asunto/psicología , Difusión de la Información , Relaciones Profesional-Paciente , Investigación Biomédica/métodos , Ensayos Clínicos como Asunto/métodos , Interpretación Estadística de Datos , Toma de Decisiones/fisiología , Revelación , Humanos , Individualidad
14.
Med Sci (Paris) ; 28 Spec No 1: 24-7, 2012 Mar.
Artículo en Francés | MEDLINE | ID: mdl-22494653

RESUMEN

The purpose of this review of the literature is to document how breast cancer patients perceive the use of tumor gene profiling approaches to better adapt treatments, and to identify the features of these approaches that may impact their clinical application. In general, the use of tumor genomic analysis was perceived by patients as an approach facilitating personalized medicine and received considerable support. Nevertheless, a number of confusions and worries about these practices were also identified. 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 their tumor gene analysis have realistic expectations and sound deductions of the final result disclosure process.


Asunto(s)
Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Neoplasias de la Mama/tratamiento farmacológico , Carcinoma/tratamiento farmacológico , Perfilación de la Expresión Génica , Terapia Molecular Dirigida/estadística & datos numéricos , Percepción/fisiología , Medicina de Precisión/psicología , Neoplasias de la Mama/genética , Neoplasias de la Mama/psicología , Carcinoma/genética , Carcinoma/psicología , Barreras de Comunicación , Femenino , Perfilación de la Expresión Génica/estadística & datos numéricos , Humanos , Técnicas de Diagnóstico Molecular/métodos
15.
Med Sci (Paris) ; 27(6-7): 657-61, 2011.
Artículo en Francés | MEDLINE | ID: mdl-21718651

RESUMEN

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.


Asunto(s)
Neoplasias de la Mama/diagnóstico , Pruebas Genéticas , Síndromes Neoplásicos Hereditarios/diagnóstico , Neoplasias Ováricas/diagnóstico , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/genética , Neoplasias de la Mama/prevención & control , Femenino , Predicción , Francia/epidemiología , Genes BRCA1 , Genes BRCA2 , Genes Dominantes , Asesoramiento Genético , Predisposición Genética a la Enfermedad , Pruebas Genéticas/psicología , Pruebas Genéticas/estadística & datos numéricos , Accesibilidad a los Servicios de Salud , Necesidades y Demandas de Servicios de Salud , Humanos , Mastectomía/estadística & datos numéricos , Síndromes Neoplásicos Hereditarios/epidemiología , Síndromes Neoplásicos Hereditarios/genética , Neoplasias Ováricas/epidemiología , Neoplasias Ováricas/genética , Neoplasias Ováricas/prevención & control , Ovariectomía/estadística & datos numéricos , Estudios Prospectivos , Riesgo , Revelación de la Verdad
16.
Genet Med ; 12(12): 801-7, 2010 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-20921896

RESUMEN

PURPOSE: To investigate the medical and psychosocial factors determining the time to prophylactic surgery of unaffected women carriers of a deleterious BRCA1/2 mutation. METHODS: Prospective study on a French national cohort of unaffected BRCA1/2 carriers (N = 244); multivariate Cox proportional hazard modeling. RESULTS: Median follow-up time was 2.33 years (range, 0.04-6.84 years). Time to surgery was shorter when the psychological impact of BRCA1/2 result disclosure was stated to be higher (P ≤ 0.01). Those who intended to opt for prophylactic surgery before being tested did so faster and more frequently after test disclosure than those who were undecided/opposed. The older the women were, the faster their uptake of risk-reducing salpingo-oophorectomy (adjusted hazard ratio >2.95; P < 0.001) was; the uptake of those with at least two children was also faster (adjusted hazard ratio = 2.51; [1.38-4.55]). Those who opted most quickly for risk-reducing mastectomy more frequently had a younger child at the time of testing (adjusted hazard ratio = 4.63 [1.56-13.74]). Time to surgery was shorter when there was a first-degree relative with ovarian/breast cancer (P ≤ 0.01). CONCLUSION: Time to prophylactic surgery depends on the stated psychological impact of disclosure and on women's cognitive anticipation of surgery after adjusting on sociodemographic characteristics.


Asunto(s)
Neoplasias de la Mama , Genes BRCA1 , Genes BRCA2 , Heterocigoto , Mutación/genética , Adulto , Neoplasias de la Mama/genética , Neoplasias de la Mama/psicología , Neoplasias de la Mama/cirugía , Composición Familiar , Femenino , Francia , Humanos , Estimación de Kaplan-Meier , Mastectomía , Persona de Mediana Edad , Neoplasias Ováricas/genética , Neoplasias Ováricas/psicología , Neoplasias Ováricas/cirugía , Ovariectomía , Estudios Prospectivos , Factores de Riesgo , Factores de Tiempo
17.
Psychooncology ; 19(5): 472-9, 2010 May.
Artículo en Inglés | MEDLINE | ID: mdl-19507263

RESUMEN

OBJECTIVE: The aim of this study on primary breast cancer patients undergoing adjuvant tamoxifen treatment was to determine how their perceptions of the treatment and their experience of side-effects contributed to their adherence to the treatment. METHODS: A consecutive series of primary breast cancer patients eligible for tamoxifen therapy were studied qualitatively by conducting semi-structured in-depth interviews at two French cancer centres. RESULTS: The women aged 35-65 (N=34) were struggling with several issues involving their understanding and experience of the treatment, which have not been documented so far. These issues included confusion about the 'hormonal' nature and activity of tamoxifen and the etiology of the changes in their menopausal status, as well as the symbolic associations formed by patients about the paradox of taking a treatment that has aging effects but saves lives. CONCLUSIONS: This study shows the great physical burden often associated with tamoxifen treatment and brings to light women's own complex representations of the treatment and their interpretation of the side-effects. Better communication between health-care providers and patients should ultimately help to prevent refusal or discontinuation of tamoxifen treatment.


Asunto(s)
Actitud Frente a la Salud , Neoplasias de la Mama/tratamiento farmacológico , Antagonistas de Estrógenos/uso terapéutico , Cooperación del Paciente/estadística & datos numéricos , Tamoxifeno/uso terapéutico , Adaptación Psicológica , Adulto , Comunicación , Costo de Enfermedad , Femenino , Humanos , Entrevista Psicológica , Persona de Mediana Edad , Relaciones Profesional-Paciente , Encuestas y Cuestionarios
18.
J Health Psychol ; 25(10-11): 1396-1409, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-29417840

RESUMEN

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.


Asunto(s)
Toma de Decisiones Clínicas , Neoplasias/terapia , Oncólogos/psicología , Relaciones Médico-Paciente , Actitud del Personal de Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/mortalidad , Investigación Cualitativa , Incertidumbre
19.
Genet Med ; 10(2): 99-106, 2008 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-18281916

RESUMEN

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.


Asunto(s)
Genética Médica/educación , Médicos de Familia/educación , Anomalías Congénitas/genética , Europa (Continente) , Análisis Factorial , Asesoramiento Genético/métodos , Genética Médica/métodos , Humanos , Medición de Riesgo , Encuestas y Cuestionarios
20.
Genet Med ; 10(2): 107-13, 2008 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-18281917

RESUMEN

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 [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 physicians gave higher priorities to Basic Genetics and Congenital Malformations (OR adj, 1.5; 95% CI, 1.1-1.9), and to Techniques and Innovation in Genetics (OR adj: 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, new technologies, or basic concepts.


Asunto(s)
Genética Médica/educación , Médicos de Familia/educación , Estudios Transversales , Europa (Continente) , Femenino , Asesoramiento Genético/métodos , Genética Médica/métodos , Humanos , Masculino , Pautas de la Práctica en Medicina , Factores Sexuales , Factores Socioeconómicos , Encuestas y Cuestionarios
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