Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation
Identifieur interne : 000218 ( Istex/Corpus ); précédent : 000217; suivant : 000219Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation
Auteurs : G. Freyer ; A. Dazord ; M. Schlumberger ; B. Conte-Devolx ; B. Ligneau ; V. Trillet-Lenoir ; G. M. LenoirSource :
- Annals of Oncology [ 0923-7534 ] ; 1999-01.
Abstract
Background: Many crucial problems are associated with the diagnosis of inherited cancer susceptibility. One of the most important is related to the psychosocial consequences of the knowledge by the patients and their relatives of their own genetical status. Little data are available in the literature, mainly from studies including small numbers of selected and motivated patients. Patients and methods: From January till December 1997, we studied the psychometric and quality of life parameters of 77 subjects followed in two French specialized centers. These subjects had been treated for either sporadic or familial or were at risk for medullary thyroid carcinoma. All patients had previously attended genetic counselling with detection of germ-line Ret-mutations, were informed on-their own genetic risk, had good short-term prognosis and performance status and did not receive recent cancer treatment. Each patient was invited to answer two questionnaires, the hospital anxiety and depression scale (HADS) and the subjective quality of life profile (SQLP). Results: We report herein the descriptive results of this study (HADS and SQLP scores and distributions) and describe the individual clinical covariates that might explain the observed differences between subgroups of individuals. Although psychometric scores appeared similar in these subgroups, quality of life scores were lower in Ret-mutation carriers. Genetically-predisposed patients were less satisfied and expressed more expectations for favourable change in their quality of life. Conclusion: This finding suggests a high level of frustration and latent unsatisfaction related either to the management of the genetic information given by the clinicians and its psychosocial consequences or simply to the knowledge of the genetic risk of cancer. Further studies on the individual consequences of genetic testing, information delivery and when necessary psychotherapeutic interventions, are needed to insure the quality of presymptomatic genetic testing in this field of oncology.
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DOI: 10.1023/A:1008349318728
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Schlumberger</name><affiliation><mods:affiliation>Service de Médecine Nucléaire, Institut Gustave Roussy Villejuif</mods:affiliation></affiliation></author><author><name sortKey="Conte Devolx, B" sort="Conte Devolx, B" uniqKey="Conte Devolx B" first="B." last="Conte-Devolx">B. Conte-Devolx</name><affiliation><mods:affiliation>Service d'Endocrinologie and Groupe d'Etudes des Tumeurs a Calcitonine (GETC) Hópital de la Timone, Marseille</mods:affiliation></affiliation></author><author><name sortKey="Ligneau, B" sort="Ligneau, B" uniqKey="Ligneau B" first="B." last="Ligneau">B. Ligneau</name><affiliation><mods:affiliation>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</mods:affiliation></affiliation></author><author><name sortKey="Trillet Lenoir, V" sort="Trillet Lenoir, V" uniqKey="Trillet Lenoir V" first="V." last="Trillet-Lenoir">V. 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Freyer</name><affiliation><mods:affiliation>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud EA 643, UFR Laennec</mods:affiliation></affiliation><affiliation><mods:affiliation>E-mail: freyer@radiotherapie.univ-Lyonl.fr</mods:affiliation></affiliation></author><author><name sortKey="Dazord, A" sort="Dazord, A" uniqKey="Dazord A" first="A." last="Dazord">A. Dazord</name><affiliation><mods:affiliation>Unité SCRIPT-INSERM Hópital Saint-Jean de Dieu, Lyon</mods:affiliation></affiliation></author><author><name sortKey="Schlumberger, M" sort="Schlumberger, M" uniqKey="Schlumberger M" first="M." last="Schlumberger">M. Schlumberger</name><affiliation><mods:affiliation>Service de Médecine Nucléaire, Institut Gustave Roussy Villejuif</mods:affiliation></affiliation></author><author><name sortKey="Conte Devolx, B" sort="Conte Devolx, B" uniqKey="Conte Devolx B" first="B." last="Conte-Devolx">B. Conte-Devolx</name><affiliation><mods:affiliation>Service d'Endocrinologie and Groupe d'Etudes des Tumeurs a Calcitonine (GETC) Hópital de la Timone, Marseille</mods:affiliation></affiliation></author><author><name sortKey="Ligneau, B" sort="Ligneau, B" uniqKey="Ligneau B" first="B." last="Ligneau">B. Ligneau</name><affiliation><mods:affiliation>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</mods:affiliation></affiliation></author><author><name sortKey="Trillet Lenoir, V" sort="Trillet Lenoir, V" uniqKey="Trillet Lenoir V" first="V." last="Trillet-Lenoir">V. Trillet-Lenoir</name><affiliation><mods:affiliation>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud EA 643, UFR Laennec</mods:affiliation></affiliation></author><author><name sortKey="Lenoir, G M" sort="Lenoir, G M" uniqKey="Lenoir G" first="G. M." last="Lenoir">G. M. Lenoir</name><affiliation><mods:affiliation>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</mods:affiliation></affiliation></author></analytic><monogr></monogr><series><title level="j">Annals of Oncology</title><idno type="ISSN">0923-7534</idno><idno type="eISSN">1569-8041</idno><imprint><publisher>Oxford University Press</publisher><date type="published" when="1999-01">1999-01</date><biblScope unit="volume">10</biblScope><biblScope unit="issue">1</biblScope><biblScope unit="page" from="87">87</biblScope><biblScope unit="page" to="95">95</biblScope></imprint><idno type="ISSN">0923-7534</idno></series><idno type="istex">B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782</idno><idno type="DOI">10.1023/A:1008349318728</idno><idno type="ArticleID">10.1.87</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0923-7534</idno></seriesStmt></fileDesc><profileDesc><textClass></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract">Background: Many crucial problems are associated with the diagnosis of inherited cancer susceptibility. One of the most important is related to the psychosocial consequences of the knowledge by the patients and their relatives of their own genetical status. Little data are available in the literature, mainly from studies including small numbers of selected and motivated patients. Patients and methods: From January till December 1997, we studied the psychometric and quality of life parameters of 77 subjects followed in two French specialized centers. These subjects had been treated for either sporadic or familial or were at risk for medullary thyroid carcinoma. All patients had previously attended genetic counselling with detection of germ-line Ret-mutations, were informed on-their own genetic risk, had good short-term prognosis and performance status and did not receive recent cancer treatment. Each patient was invited to answer two questionnaires, the hospital anxiety and depression scale (HADS) and the subjective quality of life profile (SQLP). Results: We report herein the descriptive results of this study (HADS and SQLP scores and distributions) and describe the individual clinical covariates that might explain the observed differences between subgroups of individuals. Although psychometric scores appeared similar in these subgroups, quality of life scores were lower in Ret-mutation carriers. Genetically-predisposed patients were less satisfied and expressed more expectations for favourable change in their quality of life. Conclusion: This finding suggests a high level of frustration and latent unsatisfaction related either to the management of the genetic information given by the clinicians and its psychosocial consequences or simply to the knowledge of the genetic risk of cancer. Further studies on the individual consequences of genetic testing, information delivery and when necessary psychotherapeutic interventions, are needed to insure the quality of presymptomatic genetic testing in this field of oncology.</div></front></TEI><istex><corpusName>oup</corpusName><author><json:item><name>G. Freyer</name><affiliations><json:string>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud EA 643, UFR Laennec</json:string><json:string>E-mail: freyer@radiotherapie.univ-Lyonl.fr</json:string></affiliations></json:item><json:item><name>A. Dazord</name><affiliations><json:string>Unité SCRIPT-INSERM Hópital Saint-Jean de Dieu, Lyon</json:string></affiliations></json:item><json:item><name>M. Schlumberger</name><affiliations><json:string>Service de Médecine Nucléaire, Institut Gustave Roussy Villejuif</json:string></affiliations></json:item><json:item><name>B. Conte-Devolx</name><affiliations><json:string>Service d'Endocrinologie and Groupe d'Etudes des Tumeurs a Calcitonine (GETC) Hópital de la Timone, Marseille</json:string></affiliations></json:item><json:item><name>B. Ligneau</name><affiliations><json:string>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</json:string></affiliations></json:item><json:item><name>V. Trillet-Lenoir</name><affiliations><json:string>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud EA 643, UFR Laennec</json:string></affiliations></json:item><json:item><name>G. M. Lenoir</name><affiliations><json:string>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</json:string></affiliations></json:item></author><subject><json:item><lang><json:string>eng</json:string></lang><value>Original articles</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>genetic testing</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>medullary thyroid carcinoma</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>psychometric scores</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>psychosocial impact</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>quality of life</value></json:item></subject><language><json:string>eng</json:string></language><abstract>Background: Many crucial problems are associated with the diagnosis of inherited cancer susceptibility. One of the most important is related to the psychosocial consequences of the knowledge by the patients and their relatives of their own genetical status. Little data are available in the literature, mainly from studies including small numbers of selected and motivated patients. Patients and methods: From January till December 1997, we studied the psychometric and quality of life parameters of 77 subjects followed in two French specialized centers. These subjects had been treated for either sporadic or familial or were at risk for medullary thyroid carcinoma. All patients had previously attended genetic counselling with detection of germ-line Ret-mutations, were informed on-their own genetic risk, had good short-term prognosis and performance status and did not receive recent cancer treatment. Each patient was invited to answer two questionnaires, the hospital anxiety and depression scale (HADS) and the subjective quality of life profile (SQLP). Results: We report herein the descriptive results of this study (HADS and SQLP scores and distributions) and describe the individual clinical covariates that might explain the observed differences between subgroups of individuals. Although psychometric scores appeared similar in these subgroups, quality of life scores were lower in Ret-mutation carriers. Genetically-predisposed patients were less satisfied and expressed more expectations for favourable change in their quality of life. Conclusion: This finding suggests a high level of frustration and latent unsatisfaction related either to the management of the genetic information given by the clinicians and its psychosocial consequences or simply to the knowledge of the genetic risk of cancer. Further studies on the individual consequences of genetic testing, information delivery and when necessary psychotherapeutic interventions, are needed to insure the quality of presymptomatic genetic testing in this field of oncology.</abstract><qualityIndicators><score>9</score><pdfVersion>1.5</pdfVersion><pdfPageSize>595.44 x 841.68 pts</pdfPageSize><refBibsNative>false</refBibsNative><keywordCount>6</keywordCount><abstractCharCount>2050</abstractCharCount><pdfWordCount>5683</pdfWordCount><pdfCharCount>38794</pdfCharCount><pdfPageCount>10</pdfPageCount><abstractWordCount>292</abstractWordCount></qualityIndicators><title>Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation</title><genre><json:string>research-article</json:string></genre><host><volume>10</volume><pages><last>95</last><first>87</first></pages><issn><json:string>0923-7534</json:string></issn><issue>1</issue><genre></genre><language><json:string>unknown</json:string></language><eissn><json:string>1569-8041</json:string></eissn><title>Annals of Oncology</title></host><categories><wos><json:string>ONCOLOGY</json:string></wos></categories><publicationDate>1999</publicationDate><copyrightDate>1999</copyrightDate><doi><json:string>10.1023/A:1008349318728</json:string></doi><id>B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782</id><fulltext><json:item><original>true</original><mimetype>application/pdf</mimetype><extension>pdf</extension><uri>https://api.istex.fr/document/B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782/fulltext/pdf</uri></json:item><json:item><original>false</original><mimetype>application/zip</mimetype><extension>zip</extension><uri>https://api.istex.fr/document/B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782/fulltext/zip</uri></json:item><istex:fulltextTEI uri="https://api.istex.fr/document/B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782/fulltext/tei"><teiHeader><fileDesc><titleStmt><title level="a">Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation</title><respStmt xml:id="ISTEX-API" resp="Références bibliographiques récupérées via GROBID" name="ISTEX-API (INIST-CNRS)"></respStmt></titleStmt><publicationStmt><authority>ISTEX</authority><publisher>Oxford University Press</publisher><availability><p>OUP</p></availability><date>1999</date></publicationStmt><sourceDesc><biblStruct type="inbook"><analytic><title level="a">Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation</title><author><persName><forename type="first">G.</forename><surname>Freyer</surname></persName><email>freyer@radiotherapie.univ-Lyonl.fr</email><affiliation>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud EA 643, UFR Laennec</affiliation></author><author><persName><forename type="first">A.</forename><surname>Dazord</surname></persName><affiliation>Unité SCRIPT-INSERM Hópital Saint-Jean de Dieu, Lyon</affiliation></author><author><persName><forename type="first">M.</forename><surname>Schlumberger</surname></persName><affiliation>Service de Médecine Nucléaire, Institut Gustave Roussy Villejuif</affiliation></author><author><persName><forename type="first">B.</forename><surname>Conte-Devolx</surname></persName><affiliation>Service d'Endocrinologie and Groupe d'Etudes des Tumeurs a Calcitonine (GETC) Hópital de la Timone, Marseille</affiliation></author><author><persName><forename type="first">B.</forename><surname>Ligneau</surname></persName><affiliation>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</affiliation></author><author><persName><forename type="first">V.</forename><surname>Trillet-Lenoir</surname></persName><affiliation>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud EA 643, UFR Laennec</affiliation></author><author><persName><forename type="first">G. M.</forename><surname>Lenoir</surname></persName><affiliation>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</affiliation></author></analytic><monogr><title level="j">Annals of Oncology</title><idno type="pISSN">0923-7534</idno><idno type="eISSN">1569-8041</idno><imprint><publisher>Oxford University Press</publisher><date type="published" when="1999-01"></date><biblScope unit="volume">10</biblScope><biblScope unit="issue">1</biblScope><biblScope unit="page" from="87">87</biblScope><biblScope unit="page" to="95">95</biblScope></imprint></monogr><idno type="istex">B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782</idno><idno type="DOI">10.1023/A:1008349318728</idno><idno type="ArticleID">10.1.87</idno></biblStruct></sourceDesc></fileDesc><profileDesc><creation><date>1999</date></creation><langUsage><language ident="en">en</language></langUsage><abstract><p>Background: Many crucial problems are associated with the diagnosis of inherited cancer susceptibility. One of the most important is related to the psychosocial consequences of the knowledge by the patients and their relatives of their own genetical status. Little data are available in the literature, mainly from studies including small numbers of selected and motivated patients. Patients and methods: From January till December 1997, we studied the psychometric and quality of life parameters of 77 subjects followed in two French specialized centers. These subjects had been treated for either sporadic or familial or were at risk for medullary thyroid carcinoma. All patients had previously attended genetic counselling with detection of germ-line Ret-mutations, were informed on-their own genetic risk, had good short-term prognosis and performance status and did not receive recent cancer treatment. Each patient was invited to answer two questionnaires, the hospital anxiety and depression scale (HADS) and the subjective quality of life profile (SQLP). Results: We report herein the descriptive results of this study (HADS and SQLP scores and distributions) and describe the individual clinical covariates that might explain the observed differences between subgroups of individuals. Although psychometric scores appeared similar in these subgroups, quality of life scores were lower in Ret-mutation carriers. Genetically-predisposed patients were less satisfied and expressed more expectations for favourable change in their quality of life. Conclusion: This finding suggests a high level of frustration and latent unsatisfaction related either to the management of the genetic information given by the clinicians and its psychosocial consequences or simply to the knowledge of the genetic risk of cancer. Further studies on the individual consequences of genetic testing, information delivery and when necessary psychotherapeutic interventions, are needed to insure the quality of presymptomatic genetic testing in this field of oncology.</p></abstract><textClass><keywords scheme="keyword"><list><item><term>Original articles</term></item></list></keywords></textClass><textClass><keywords scheme="keyword"><list><head>Keywords</head><item><term>genetic testing</term></item><item><term>medullary thyroid carcinoma</term></item><item><term>psychometric scores</term></item><item><term>psychosocial impact</term></item><item><term>quality of life</term></item></list></keywords></textClass></profileDesc><revisionDesc><change when="1999-01">Published</change><change xml:id="refBibs-istex" who="#ISTEX-API" when="2016-3-14">References added</change></revisionDesc></teiHeader></istex:fulltextTEI><json:item><original>false</original><mimetype>text/plain</mimetype><extension>txt</extension><uri>https://api.istex.fr/document/B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782/fulltext/txt</uri></json:item></fulltext><metadata><istex:metadataXml wicri:clean="corpus oup" wicri:toSee="no header"><istex:docType PUBLIC="-//NLM//DTD Journal Publishing DTD v2.3 20070202//EN" URI="journalpublishing.dtd" name="istex:docType"></istex:docType><istex:document><article article-type="research-article"><front><journal-meta><journal-id journal-id-type="hwp">annonc</journal-id><journal-id journal-id-type="publisher-id">annonc</journal-id><journal-id journal-id-type="pmc">annonc</journal-id><journal-title>Annals of Oncology</journal-title><issn pub-type="epub">1569-8041</issn><issn pub-type="ppub">0923-7534</issn><publisher><publisher-name>Oxford University Press</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="publisher-id">10.1.87</article-id><article-id pub-id-type="doi">10.1023/A:1008349318728</article-id><article-categories><subj-group><subject>Original articles</subject></subj-group></article-categories><title-group><article-title>Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation</article-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Freyer</surname><given-names>G.</given-names></name><degrees>MD</degrees><xref ref-type="aff" rid="au1"><sup>1</sup></xref><xref ref-type="corresp" rid="cor1"></xref></contrib><contrib contrib-type="author"><name><surname>Dazord</surname><given-names>A.</given-names></name><xref ref-type="aff" rid="au2"><sup>2</sup></xref></contrib><contrib contrib-type="author"><name><surname>Schlumberger</surname><given-names>M.</given-names></name><xref ref-type="aff" rid="au3"><sup>3</sup></xref></contrib><contrib contrib-type="author"><name><surname>Conte-Devolx</surname><given-names>B.</given-names></name><xref ref-type="aff" rid="au4"><sup>4</sup></xref></contrib><contrib contrib-type="author"><name><surname>Ligneau</surname><given-names>B.</given-names></name><xref ref-type="aff" rid="au5"><sup>5</sup></xref></contrib><contrib contrib-type="author"><name><surname>Trillet-Lenoir</surname><given-names>V.</given-names></name><xref ref-type="aff" rid="au1"><sup>1</sup></xref></contrib><contrib contrib-type="author"><name><surname>Lenoir</surname><given-names>G. M.</given-names></name><xref ref-type="aff" rid="au5"><sup>5</sup></xref></contrib><aff id="au1"><sup>1</sup><institution>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud</institution> <addr-line>EA 643, UFR Laennec</addr-line></aff><aff id="au2"><sup>2</sup><institution>Unité SCRIPT-INSERM</institution> <addr-line>Hópital Saint-Jean de Dieu, Lyon</addr-line></aff><aff id="au3"><sup>3</sup><institution>Service de Médecine Nucléaire, Institut Gustave Roussy</institution> <addr-line>Villejuif</addr-line></aff><aff id="au4"><sup>4</sup><institution>Service d'Endocrinologie and Groupe d'Etudes des Tumeurs a Calcitonine (GETC)</institution> <addr-line>Hópital de la Timone, Marseille</addr-line></aff><aff id="au5"><sup>5</sup><institution>Laboratoire de généelique</institution> <addr-line>Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</addr-line></aff></contrib-group><author-notes><corresp id="cor1"><italic>Correspondence to:</italic> G. Freyer, MD, Medical Oncology Unit, Centre Hospitalier Lyon-Sud, 69495 Pierre-Bénite Cédex France E-mail: <email>freyer@radiotherapie.univ-Lyonl.fr</email></corresp></author-notes><pub-date pub-type="ppub"><month>1</month><year>1999</year></pub-date><volume>10</volume><issue>1</issue><fpage>87</fpage><lpage>95</lpage><history><date date-type="received"><day>19</day><month>8</month><year>1998</year></date><date date-type="accepted"><day>16</day><month>12</month><year>1998</year></date></history><copyright-statement>© 1999 Kulwer Academic Publishers</copyright-statement><copyright-year>1999</copyright-year><abstract><p><italic>Background:</italic> Many crucial problems are associated with the diagnosis of inherited cancer susceptibility. One of the most important is related to the psychosocial consequences of the knowledge by the patients and their relatives of their own genetical status. Little data are available in the literature, mainly from studies including small numbers of selected and motivated patients.</p><p><italic>Patients and methods:</italic> From January till December 1997, we studied the psychometric and quality of life parameters of 77 subjects followed in two French specialized centers. These subjects had been treated for either sporadic or familial or were at risk for medullary thyroid carcinoma. All patients had previously attended genetic counselling with detection of germ-line Ret-mutations, were informed on-their own genetic risk, had good short-term prognosis and performance status and did not receive recent cancer treatment. Each patient was invited to answer two questionnaires, the hospital anxiety and depression scale (HADS) and the subjective quality of life profile (SQLP).</p><p><italic>Results:</italic> We report herein the descriptive results of this study (HADS and SQLP scores and distributions) and describe the individual clinical covariates that might explain the observed differences between subgroups of individuals. Although psychometric scores appeared similar in these subgroups, quality of life scores were lower in Ret-mutation carriers. Genetically-predisposed patients were less satisfied and expressed more expectations for favourable change in their quality of life.</p><p><italic>Conclusion:</italic> This finding suggests a high level of frustration and latent unsatisfaction related either to the management of the genetic information given by the clinicians and its psychosocial consequences or simply to the knowledge of the genetic risk of cancer. Further studies on the individual consequences of genetic testing, information delivery and when necessary psychotherapeutic interventions, are needed to insure the quality of presymptomatic genetic testing in this field of oncology.</p></abstract><kwd-group><kwd>genetic testing</kwd><kwd>medullary thyroid carcinoma</kwd><kwd>psychometric scores</kwd><kwd>psychosocial impact</kwd><kwd>quality of life</kwd></kwd-group></article-meta></front></article></istex:document></istex:metadataXml><mods version="3.6"><titleInfo><title>Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation</title></titleInfo><titleInfo type="alternative" contentType="CDATA"><title>Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation</title></titleInfo><name type="personal"><namePart type="given">G.</namePart><namePart type="family">Freyer</namePart><affiliation>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud EA 643, UFR Laennec</affiliation><affiliation>E-mail: freyer@radiotherapie.univ-Lyonl.fr</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">A.</namePart><namePart type="family">Dazord</namePart><affiliation>Unité SCRIPT-INSERM Hópital Saint-Jean de Dieu, Lyon</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">M.</namePart><namePart type="family">Schlumberger</namePart><affiliation>Service de Médecine Nucléaire, Institut Gustave Roussy Villejuif</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">B.</namePart><namePart type="family">Conte-Devolx</namePart><affiliation>Service d'Endocrinologie and Groupe d'Etudes des Tumeurs a Calcitonine (GETC) Hópital de la Timone, Marseille</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">B.</namePart><namePart type="family">Ligneau</namePart><affiliation>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">V.</namePart><namePart type="family">Trillet-Lenoir</namePart><affiliation>Unité d'Oncologie Médicate, Centre Hospitalier Lyon-Sud EA 643, UFR Laennec</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">G. M.</namePart><namePart type="family">Lenoir</namePart><affiliation>Laboratoire de généelique Hópital Edouard Herriot and UMR 5641, Domaine Rockefeller, Lyon, France</affiliation><role><roleTerm type="text">author</roleTerm></role></name><typeOfResource>text</typeOfResource><genre type="research-article" displayLabel="research-article"></genre><subject><topic>Original articles</topic></subject><originInfo><publisher>Oxford University Press</publisher><dateIssued encoding="w3cdtf">1999-01</dateIssued><copyrightDate encoding="w3cdtf">1999</copyrightDate></originInfo><language><languageTerm type="code" authority="iso639-2b">eng</languageTerm><languageTerm type="code" authority="rfc3066">en</languageTerm></language><physicalDescription><internetMediaType>text/html</internetMediaType></physicalDescription><abstract>Background: Many crucial problems are associated with the diagnosis of inherited cancer susceptibility. One of the most important is related to the psychosocial consequences of the knowledge by the patients and their relatives of their own genetical status. Little data are available in the literature, mainly from studies including small numbers of selected and motivated patients. Patients and methods: From January till December 1997, we studied the psychometric and quality of life parameters of 77 subjects followed in two French specialized centers. These subjects had been treated for either sporadic or familial or were at risk for medullary thyroid carcinoma. All patients had previously attended genetic counselling with detection of germ-line Ret-mutations, were informed on-their own genetic risk, had good short-term prognosis and performance status and did not receive recent cancer treatment. Each patient was invited to answer two questionnaires, the hospital anxiety and depression scale (HADS) and the subjective quality of life profile (SQLP). Results: We report herein the descriptive results of this study (HADS and SQLP scores and distributions) and describe the individual clinical covariates that might explain the observed differences between subgroups of individuals. Although psychometric scores appeared similar in these subgroups, quality of life scores were lower in Ret-mutation carriers. Genetically-predisposed patients were less satisfied and expressed more expectations for favourable change in their quality of life. Conclusion: This finding suggests a high level of frustration and latent unsatisfaction related either to the management of the genetic information given by the clinicians and its psychosocial consequences or simply to the knowledge of the genetic risk of cancer. Further studies on the individual consequences of genetic testing, information delivery and when necessary psychotherapeutic interventions, are needed to insure the quality of presymptomatic genetic testing in this field of oncology.</abstract><subject><genre>Keywords</genre><topic>genetic testing</topic><topic>medullary thyroid carcinoma</topic><topic>psychometric scores</topic><topic>psychosocial impact</topic><topic>quality of life</topic></subject><relatedItem type="host"><titleInfo><title>Annals of Oncology</title></titleInfo><genre type="Journal">journal</genre><identifier type="ISSN">0923-7534</identifier><identifier type="eISSN">1569-8041</identifier><identifier type="PublisherID">annonc</identifier><identifier type="PublisherID-hwp">annonc</identifier><part><date>1999</date><detail type="volume"><caption>vol.</caption><number>10</number></detail><detail type="issue"><caption>no.</caption><number>1</number></detail><extent unit="pages"><start>87</start><end>95</end></extent></part></relatedItem><identifier type="istex">B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782</identifier><identifier type="DOI">10.1023/A:1008349318728</identifier><identifier type="ArticleID">10.1.87</identifier><accessCondition type="use and reproduction" contentType="copyright">© 1999 Kulwer Academic Publishers</accessCondition><recordInfo><recordContentSource>OUP</recordContentSource></recordInfo></mods></metadata><annexes><json:item><original>true</original><mimetype>application/pdf</mimetype><extension>pdf</extension><uri>https://api.istex.fr/document/B4324366C6CF8425BEA9D4DFEDFEBF6CCE1D6782/annexes/pdf</uri></json:item></annexes><serie></serie></istex></record>Pour manipuler ce document sous Unix (Dilib)
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