Survey of essential tremor patients on their knowledge about the genetics of the disease.
Identifieur interne : 003918 ( PubMed/Checkpoint ); précédent : 003917; suivant : 003919Survey of essential tremor patients on their knowledge about the genetics of the disease.
Auteurs : Dryden Watner [États-Unis] ; Eva C. Jurewicz ; Elan D. LouisSource :
- Movement disorders : official journal of the Movement Disorder Society [ 0885-3185 ] ; 2002.
English descriptors
- KwdEn :
- MESH :
- genetics : Essential Tremor, Genetic Predisposition to Disease.
- psychology : Essential Tremor.
- Adult, Aged, Aged, 80 and over, Female, Genetic Testing, Humans, Male, Middle Aged, Patient Education as Topic.
Abstract
A group of essential tremor (ET) patients were surveyed on their knowledge of the genetics of ET in order to provide important information to clinicians who care for and educate patients about this disease. ET patients were ascertained from neurologists at Columbia-Presbyterian Medical Center. A 5- to 10-minute survey was administered to assess knowledge of the genetics of ET. Fifty ET patients had been living with their disease for a mean of 24.2 years. Approximately half (n = 27) reported a family history of ET. When asked, "What causes ET," 12 (24%) replied that it was "hereditary." Even among the 27 who reported a family history, only 25.9% replied that it was "hereditary." A minority of patients (12 [24%]) thought that it was "very likely" that other members of their family would develop the disease some day. Three patients were aware that genetic linkage had been established. Our findings suggest that the majority of patients with ET are not well informed about the genetic basis for the disease. Because of recent advances in genetic research, physicians may need to incorporate more genetic information and education into their practice, including information on risk to other family members and genetic testing. It is hoped that these survey results could be used to improve patient education and to provide clinicians with further insight into patients' perspectives.
PubMed: 11921127
Affiliations:
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Sergievsky Center and Department of Neurology, College of Physicians and Surgeons, Columbia University, New York, New York</wicri:regionArea><placeName><region type="state">État de New York</region><settlement type="city">New York</settlement></placeName><orgName type="university">Université Columbia</orgName></affiliation></author><author><name sortKey="Jurewicz, Eva C" sort="Jurewicz, Eva C" uniqKey="Jurewicz E" first="Eva C" last="Jurewicz">Eva C. Jurewicz</name></author><author><name sortKey="Louis, Elan D" sort="Louis, Elan D" uniqKey="Louis E" first="Elan D" last="Louis">Elan D. 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Louis</name></author></analytic><series><title level="j">Movement disorders : official journal of the Movement Disorder Society</title><idno type="ISSN">0885-3185</idno><imprint><date when="2002" type="published">2002</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adult</term><term>Aged</term><term>Aged, 80 and over</term><term>Essential Tremor (genetics)</term><term>Essential Tremor (psychology)</term><term>Female</term><term>Genetic Predisposition to Disease (genetics)</term><term>Genetic Testing</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Patient Education as Topic</term></keywords><keywords scheme="MESH" qualifier="genetics" xml:lang="en"><term>Essential Tremor</term><term>Genetic Predisposition to Disease</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Essential Tremor</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adult</term><term>Aged</term><term>Aged, 80 and over</term><term>Female</term><term>Genetic Testing</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Patient Education as Topic</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">A group of essential tremor (ET) patients were surveyed on their knowledge of the genetics of ET in order to provide important information to clinicians who care for and educate patients about this disease. ET patients were ascertained from neurologists at Columbia-Presbyterian Medical Center. A 5- to 10-minute survey was administered to assess knowledge of the genetics of ET. Fifty ET patients had been living with their disease for a mean of 24.2 years. Approximately half (n = 27) reported a family history of ET. When asked, "What causes ET," 12 (24%) replied that it was "hereditary." Even among the 27 who reported a family history, only 25.9% replied that it was "hereditary." A minority of patients (12 [24%]) thought that it was "very likely" that other members of their family would develop the disease some day. Three patients were aware that genetic linkage had been established. Our findings suggest that the majority of patients with ET are not well informed about the genetic basis for the disease. Because of recent advances in genetic research, physicians may need to incorporate more genetic information and education into their practice, including information on risk to other family members and genetic testing. It is hoped that these survey results could be used to improve patient education and to provide clinicians with further insight into patients' perspectives.</div></front></TEI><pubmed><MedlineCitation Owner="NLM" Status="MEDLINE"><PMID Version="1">11921127</PMID><DateCreated><Year>2002</Year><Month>03</Month><Day>28</Day></DateCreated><DateCompleted><Year>2002</Year><Month>05</Month><Day>17</Day></DateCompleted><DateRevised><Year>2009</Year><Month>11</Month><Day>19</Day></DateRevised><Article PubModel="Print"><Journal><ISSN IssnType="Print">0885-3185</ISSN><JournalIssue CitedMedium="Print"><Volume>17</Volume><Issue>2</Issue><PubDate><Year>2002</Year><Month>Mar</Month></PubDate></JournalIssue><Title>Movement disorders : official journal of the Movement Disorder Society</Title><ISOAbbreviation>Mov. 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A minority of patients (12 [24%]) thought that it was "very likely" that other members of their family would develop the disease some day. Three patients were aware that genetic linkage had been established. Our findings suggest that the majority of patients with ET are not well informed about the genetic basis for the disease. Because of recent advances in genetic research, physicians may need to incorporate more genetic information and education into their practice, including information on risk to other family members and genetic testing. It is hoped that these survey results could be used to improve patient education and to provide clinicians with further insight into patients' perspectives.</AbstractText><CopyrightInformation>Copyright 2002 Movement Disorder Society.</CopyrightInformation></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Watner</LastName><ForeName>Dryden</ForeName><Initials>D</Initials><AffiliationInfo><Affiliation>The Gertrude H. Sergievsky Center and Department of Neurology, College of Physicians and Surgeons, Columbia University, New York, New York, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Jurewicz</LastName><ForeName>Eva C</ForeName><Initials>EC</Initials></Author><Author ValidYN="Y"><LastName>Louis</LastName><ForeName>Elan D</ForeName><Initials>ED</Initials></Author></AuthorList><Language>eng</Language><GrantList CompleteYN="Y"><Grant><GrantID>R01 NS39422</GrantID><Acronym>NS</Acronym><Agency>NINDS NIH HHS</Agency><Country>United States</Country></Grant></GrantList><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType><PublicationType UI="D013485">Research Support, Non-U.S. Gov't</PublicationType><PublicationType UI="D013487">Research Support, U.S. Gov't, P.H.S.</PublicationType></PublicationTypeList></Article><MedlineJournalInfo><Country>United States</Country><MedlineTA>Mov Disord</MedlineTA><NlmUniqueID>8610688</NlmUniqueID><ISSNLinking>0885-3185</ISSNLinking></MedlineJournalInfo><CitationSubset>IM</CitationSubset><MeshHeadingList><MeshHeading><DescriptorName MajorTopicYN="N" UI="D000328">Adult</DescriptorName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D000368">Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D000369">Aged, 80 and over</DescriptorName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D020329">Essential Tremor</DescriptorName><QualifierName MajorTopicYN="Y" UI="Q000235">genetics</QualifierName><QualifierName MajorTopicYN="N" UI="Q000523">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D005260">Female</DescriptorName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D020022">Genetic Predisposition to Disease</DescriptorName><QualifierName MajorTopicYN="N" UI="Q000235">genetics</QualifierName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D005820">Genetic Testing</DescriptorName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D006801">Humans</DescriptorName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D008297">Male</DescriptorName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="N" UI="D008875">Middle Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName MajorTopicYN="Y" UI="D010353">Patient Education as Topic</DescriptorName></MeshHeading></MeshHeadingList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="pubmed"><Year>2002</Year><Month>3</Month><Day>29</Day><Hour>10</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2002</Year><Month>5</Month><Day>23</Day><Hour>10</Hour><Minute>1</Minute></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2002</Year><Month>3</Month><Day>29</Day><Hour>10</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>ppublish</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">11921127</ArticleId><ArticleId IdType="pii">10.1002/mds.10085</ArticleId></ArticleIdList></PubmedData></pubmed><affiliations><list><country><li>États-Unis</li></country><region><li>État de New York</li></region><settlement><li>New York</li></settlement><orgName><li>Université Columbia</li></orgName></list><tree><noCountry><name sortKey="Jurewicz, Eva C" sort="Jurewicz, Eva C" uniqKey="Jurewicz E" first="Eva C" last="Jurewicz">Eva C. Jurewicz</name><name sortKey="Louis, Elan D" sort="Louis, Elan D" uniqKey="Louis E" first="Elan D" last="Louis">Elan D. Louis</name></noCountry><country name="États-Unis"><region name="État de New York"><name sortKey="Watner, Dryden" sort="Watner, Dryden" uniqKey="Watner D" first="Dryden" last="Watner">Dryden Watner</name></region></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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