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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<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>
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<mods version="3.6"><titleInfo><title>Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation</title>
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<titleInfo type="alternative" contentType="CDATA"><title>Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation</title>
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<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>
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<dateIssued encoding="w3cdtf">1999-01</dateIssued>
<copyrightDate encoding="w3cdtf">1999</copyrightDate>
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<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>
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<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>
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<extent unit="pages"><start>87</start>
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<identifier type="DOI">10.1023/A:1008349318728</identifier>
<identifier type="ArticleID">10.1.87</identifier>
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