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

Identifieur interne : 000377 ( Main/Exploration ); précédent : 000376; suivant : 000378

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

Auteurs : Fatima Belén Gauna Cristaldo [France] ; Rajae Touzani [France] ; Thémis Apostolidis [France] ; Emmanuelle Mouret-Fourme [France] ; Dominique Stoppa-Lyonnet [France] ; Christine Lasset [France] ; Jean-Pierre Fricker [France] ; Pascaline Berthet [France] ; Claire Julian-Reynier [France] ; Julien Mancini [France] ; Catherine Noguès [France] ; Anne-Déborah Bouhnik [France]

Source :

RBID : pubmed:31276266

Descripteurs français

English descriptors

Abstract

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.


DOI: 10.1002/pon.5169
PubMed: 31276266


Affiliations:


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Le document en format XML

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<name sortKey="Bouhnik, Anne Deborah" sort="Bouhnik, Anne Deborah" uniqKey="Bouhnik A" first="Anne-Déborah" last="Bouhnik">Anne-Déborah Bouhnik</name>
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<nlm:affiliation>Université Paris Descartes, Sorbonne Paris Cité, Paris, France.</nlm:affiliation>
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<nlm:affiliation>Université Claude Bernard Lyon 1, Lyon, France.</nlm:affiliation>
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<name sortKey="Fricker, Jean Pierre" sort="Fricker, Jean Pierre" uniqKey="Fricker J" first="Jean-Pierre" last="Fricker">Jean-Pierre Fricker</name>
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<nlm:affiliation>Service d'Oncogénétique, prévention, dépistage, CLCC Paul Strauss, Strasboug, France.</nlm:affiliation>
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<name sortKey="Berthet, Pascaline" sort="Berthet, Pascaline" uniqKey="Berthet P" first="Pascaline" last="Berthet">Pascaline Berthet</name>
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<nlm:affiliation>Service d'oncologie génétique, Centre François Baclesse, Caen, France.</nlm:affiliation>
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<wicri:regionArea>Service d'oncologie génétique, Centre François Baclesse, Caen</wicri:regionArea>
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<region type="region">Région Normandie</region>
<region type="old region">Basse-Normandie</region>
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<author>
<name sortKey="Julian Reynier, Claire" sort="Julian Reynier, Claire" uniqKey="Julian Reynier C" first="Claire" last="Julian-Reynier">Claire Julian-Reynier</name>
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<nlm:affiliation>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille, France.</nlm:affiliation>
<country xml:lang="fr">France</country>
<wicri:regionArea>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille</wicri:regionArea>
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<region type="region">Provence-Alpes-Côte d'Azur</region>
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<settlement type="city">Marseille</settlement>
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<affiliation wicri:level="3">
<nlm:affiliation>UMR1252, Institut Paoli-Calmettes, Marseille, France.</nlm:affiliation>
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<author>
<name sortKey="Mancini, Julien" sort="Mancini, Julien" uniqKey="Mancini J" first="Julien" last="Mancini">Julien Mancini</name>
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<nlm:affiliation>Aix Marseille Univ, APHM, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, HopTimone, BioSTIC, Biostatistique et Technologies de l'Information et de la Communication, Marseille, France.</nlm:affiliation>
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<author>
<name sortKey="Nogues, Catherine" sort="Nogues, Catherine" uniqKey="Nogues C" first="Catherine" last="Noguès">Catherine Noguès</name>
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<nlm:affiliation>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille, France.</nlm:affiliation>
<country xml:lang="fr">France</country>
<wicri:regionArea>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille</wicri:regionArea>
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<region type="region">Provence-Alpes-Côte d'Azur</region>
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</placeName>
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<nlm:affiliation>Département d'Anticipation et de Suivi des Cancers, Oncogénétique clinique, Institut Paoli-Calmettes, Marseille, France.</nlm:affiliation>
<country xml:lang="fr">France</country>
<wicri:regionArea>Département d'Anticipation et de Suivi des Cancers, Oncogénétique clinique, Institut Paoli-Calmettes, Marseille</wicri:regionArea>
<placeName>
<region type="region">Provence-Alpes-Côte d'Azur</region>
<region type="old region">Provence-Alpes-Côte d'Azur</region>
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</placeName>
</affiliation>
</author>
<author>
<name sortKey="Bouhnik, Anne Deborah" sort="Bouhnik, Anne Deborah" uniqKey="Bouhnik A" first="Anne-Déborah" last="Bouhnik">Anne-Déborah Bouhnik</name>
<affiliation wicri:level="3">
<nlm:affiliation>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille, France.</nlm:affiliation>
<country xml:lang="fr">France</country>
<wicri:regionArea>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille</wicri:regionArea>
<placeName>
<region type="region">Provence-Alpes-Côte d'Azur</region>
<region type="old region">Provence-Alpes-Côte d'Azur</region>
<settlement type="city">Marseille</settlement>
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<series>
<title level="j">Psycho-oncology</title>
<idno type="eISSN">1099-1611</idno>
<imprint>
<date when="2019" type="published">2019</date>
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<keywords scheme="KwdEn" xml:lang="en">
<term>Adolescent (MeSH)</term>
<term>Adult (MeSH)</term>
<term>Adult Children (psychology)</term>
<term>Adult Children (statistics & numerical data)</term>
<term>Aged (MeSH)</term>
<term>Breast Neoplasms (genetics)</term>
<term>Female (MeSH)</term>
<term>France (MeSH)</term>
<term>Genes, BRCA1 (MeSH)</term>
<term>Genes, BRCA2 (MeSH)</term>
<term>Genetic Counseling (statistics & numerical data)</term>
<term>Heterozygote (MeSH)</term>
<term>Humans (MeSH)</term>
<term>Male (MeSH)</term>
<term>Middle Aged (MeSH)</term>
<term>Mutation (MeSH)</term>
<term>Patient Acceptance of Health Care (psychology)</term>
<term>Self Report (MeSH)</term>
<term>Young Adult (MeSH)</term>
</keywords>
<keywords scheme="KwdFr" xml:lang="fr">
<term>Acceptation des soins par les patients (psychologie)</term>
<term>Adolescent (MeSH)</term>
<term>Adulte (MeSH)</term>
<term>Adulte d'âge moyen (MeSH)</term>
<term>Autorapport (MeSH)</term>
<term>Conseil génétique (statistiques et données numériques)</term>
<term>Enfants majeurs (psychologie)</term>
<term>Enfants majeurs (statistiques et données numériques)</term>
<term>Femelle (MeSH)</term>
<term>France (MeSH)</term>
<term>Gène BRCA1 (MeSH)</term>
<term>Gène BRCA2 (MeSH)</term>
<term>Humains (MeSH)</term>
<term>Hétérozygote (MeSH)</term>
<term>Jeune adulte (MeSH)</term>
<term>Mutation (MeSH)</term>
<term>Mâle (MeSH)</term>
<term>Sujet âgé (MeSH)</term>
<term>Tumeurs du sein (génétique)</term>
</keywords>
<keywords scheme="MESH" type="geographic" xml:lang="en">
<term>France</term>
</keywords>
<keywords scheme="MESH" qualifier="genetics" xml:lang="en">
<term>Breast Neoplasms</term>
</keywords>
<keywords scheme="MESH" qualifier="génétique" xml:lang="fr">
<term>Tumeurs du sein</term>
</keywords>
<keywords scheme="MESH" qualifier="psychologie" xml:lang="fr">
<term>Acceptation des soins par les patients</term>
<term>Enfants majeurs</term>
</keywords>
<keywords scheme="MESH" qualifier="psychology" xml:lang="en">
<term>Adult Children</term>
<term>Patient Acceptance of Health Care</term>
</keywords>
<keywords scheme="MESH" qualifier="statistics & numerical data" xml:lang="en">
<term>Adult Children</term>
<term>Genetic Counseling</term>
</keywords>
<keywords scheme="MESH" qualifier="statistiques et données numériques" xml:lang="fr">
<term>Conseil génétique</term>
<term>Enfants majeurs</term>
</keywords>
<keywords scheme="MESH" xml:lang="en">
<term>Adolescent</term>
<term>Adult</term>
<term>Aged</term>
<term>Female</term>
<term>Genes, BRCA1</term>
<term>Genes, BRCA2</term>
<term>Heterozygote</term>
<term>Humans</term>
<term>Male</term>
<term>Middle Aged</term>
<term>Mutation</term>
<term>Self Report</term>
<term>Young Adult</term>
</keywords>
<keywords scheme="MESH" xml:lang="fr">
<term>Adolescent</term>
<term>Adulte</term>
<term>Adulte d'âge moyen</term>
<term>Autorapport</term>
<term>Femelle</term>
<term>France</term>
<term>Gène BRCA1</term>
<term>Gène BRCA2</term>
<term>Humains</term>
<term>Hétérozygote</term>
<term>Jeune adulte</term>
<term>Mutation</term>
<term>Mâle</term>
<term>Sujet âgé</term>
</keywords>
<keywords scheme="Wicri" type="geographic" xml:lang="fr">
<term>France</term>
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<front>
<div type="abstract" xml:lang="en">
<p>
<b>OBJECTIVE</b>
</p>
<p>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.</p>
</div>
<div type="abstract" xml:lang="en">
<p>
<b>METHODS</b>
</p>
<p>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.</p>
</div>
<div type="abstract" xml:lang="en">
<p>
<b>RESULTS</b>
</p>
<p>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.</p>
</div>
<div type="abstract" xml:lang="en">
<p>
<b>CONCLUSIONS</b>
</p>
<p>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.</p>
</div>
</front>
</TEI>
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<Year>2020</Year>
<Month>03</Month>
<Day>16</Day>
</DateCompleted>
<DateRevised>
<Year>2020</Year>
<Month>03</Month>
<Day>16</Day>
</DateRevised>
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<Volume>28</Volume>
<Issue>9</Issue>
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<Year>2019</Year>
<Month>09</Month>
</PubDate>
</JournalIssue>
<Title>Psycho-oncology</Title>
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<AbstractText Label="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.</AbstractText>
<AbstractText Label="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.</AbstractText>
<AbstractText Label="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.</AbstractText>
<AbstractText Label="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.</AbstractText>
<CopyrightInformation>© 2019 John Wiley & Sons, Ltd.</CopyrightInformation>
</Abstract>
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<Author ValidYN="Y">
<LastName>Gauna Cristaldo</LastName>
<ForeName>Fatima Belén</ForeName>
<Initials>FB</Initials>
<AffiliationInfo>
<Affiliation>LPS EA 849, Aix-Marseille Université, Aix-en-Provence, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille, France.</Affiliation>
</AffiliationInfo>
</Author>
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<LastName>Touzani</LastName>
<ForeName>Rajae</ForeName>
<Initials>R</Initials>
<AffiliationInfo>
<Affiliation>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>UMR1252, Institut Paoli-Calmettes, Marseille, France.</Affiliation>
</AffiliationInfo>
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<LastName>Apostolidis</LastName>
<ForeName>Thémis</ForeName>
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<Affiliation>LPS EA 849, Aix-Marseille Université, Aix-en-Provence, France.</Affiliation>
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<LastName>Mouret-Fourme</LastName>
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<Affiliation>Department of Genetics, Institut Curie, Paris, France.</Affiliation>
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<LastName>Stoppa-Lyonnet</LastName>
<ForeName>Dominique</ForeName>
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<Affiliation>Department of Genetics, Institut Curie, Paris, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>INSERM U830, Institut Curie, Paris, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Université Paris Descartes, Sorbonne Paris Cité, Paris, France.</Affiliation>
</AffiliationInfo>
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<ForeName>Christine</ForeName>
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<Affiliation>Département de Santé Publique, Centre Léon Bérard, Lyon, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>CNRS UMR 5558, Laboratoire de Biométrie et Biologie Evolutive, Lyon, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Université Claude Bernard Lyon 1, Lyon, France.</Affiliation>
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<LastName>Julian-Reynier</LastName>
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</AffiliationInfo>
<AffiliationInfo>
<Affiliation>UMR1252, Institut Paoli-Calmettes, Marseille, France.</Affiliation>
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<LastName>Mancini</LastName>
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<Affiliation>Aix Marseille Univ, APHM, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, HopTimone, BioSTIC, Biostatistique et Technologies de l'Information et de la Communication, Marseille, France.</Affiliation>
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<Affiliation>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Département d'Anticipation et de Suivi des Cancers, Oncogénétique clinique, Institut Paoli-Calmettes, Marseille, France.</Affiliation>
</AffiliationInfo>
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<LastName>Bouhnik</LastName>
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<AffiliationInfo>
<Affiliation>Aix-Marseille Univ, INSERM, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, Marseille, France.</Affiliation>
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<Country>England</Country>
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<Title>REFERENCES</Title>
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