The Importance of Written Information Packages in Support of Case‐Finding Within Families at Risk for Inherited High Cholesterol
Inherited High Cholesterol is treatable, but highly underdiagnosed. To detect undiagnosed blood relatives at a presymptomatic stage, in the Netherlands written information packages are available to facilitate family communication. To investigate the role of those packages in the detection of carrier...
Gespeichert in:
| Veröffentlicht in: | Journal of genetic counseling 2006-02, Vol.15 (1), p.29-40 |
|---|---|
| Hauptverfasser: | , , , , |
| Format: | Artikel |
| Sprache: | eng |
| Schlagworte: | |
| Online-Zugang: | Volltext |
| Tags: |
Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
|
| container_end_page | 40 |
|---|---|
| container_issue | 1 |
| container_start_page | 29 |
| container_title | Journal of genetic counseling |
| container_volume | 15 |
| creator | Nieuwenhoff, Hélène W. P. Mesters, Ilse Nellissen, Joyce J. T. M. Stalenhoef, Anton F. Vries, Nanne K. |
| description | Inherited High Cholesterol is treatable, but highly underdiagnosed. To detect undiagnosed blood relatives at a presymptomatic stage, in the Netherlands written information packages are available to facilitate family communication. To investigate the role of those packages in the detection of carriers, we conducted a qualitative evaluation (plus‐minus method combined with semistructured interviews with index patients and relatives). Our data suggest that interviewees approved the family approach for finding carriers, although reluctantly. The packages aided family disclosure by reducing hesitation. However, index patients only informed first‐degree relatives and generally communicated the risk only once. This may be due to the cultural context and a limited understanding of genetics. For relatives the packages served as a cue to action and as a legitimation to gain access to a diagnostic cholesterol test. Despite the value of these written materials, they should not be used as the only communication between index patient and relatives. |
| doi_str_mv | 10.1007/s10897-005-9001-8 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_67925606</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>67925606</sourcerecordid><originalsourceid>FETCH-LOGICAL-c3639-d9de44040bfa733b19cf7b9715f37f1be36ee09832273d0197e53d5afee0ad913</originalsourceid><addsrcrecordid>eNqFkc9q3DAQh0VpaP60D9BLET305mZkWZZ1LKabbAmktCk5CtkerZXY1layKbmVPEGfsU9SLbsQ6CUnDeKbb2b4EfKWwUcGIM8jg0rJDEBkCoBl1QtywoTkGRdKvUw1CJVJCXBMTmO8AwBVCfaKHLOyKCuoqhPyeNMjXY9bH2YztUi9pbfBzTNOdD1ZH0YzOz_Rr6a9NxuM1E30-7Ld4Tu0NhH__v6zclPnpg29dXOfgJUZ3eASbGb6zcV7mjzJ1mMSY0cv3aande8HjDMGP7wmR9YMEd8c3jPyY_X5pr7Mrq4v1vWnq6zlJVdZpzosCiigsUZy3jDVWtkoyYTl0rIGeYmYDuR5LnkHTEkUvBPGpl_TKcbPyIe9dxv8zyUN16OLLQ6DmdAvUZdS5aKE8lkwB5lLJkUC3_8H3vklTOkInbOqFCwtkSC2h9rgYwxo9Ta40YQHzUDvYtT7GHWKUe9i1FXqeXcQL82I3VPHIbcEyD3wyw348LxRf7moC4Bc8X8o7Kmz</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>218651197</pqid></control><display><type>article</type><title>The Importance of Written Information Packages in Support of Case‐Finding Within Families at Risk for Inherited High Cholesterol</title><source>MEDLINE</source><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>Wiley Online Library All Journals</source><source>SpringerLink Journals - AutoHoldings</source><creator>Nieuwenhoff, Hélène W. P. ; Mesters, Ilse ; Nellissen, Joyce J. T. M. ; Stalenhoef, Anton F. ; Vries, Nanne K.</creator><creatorcontrib>Nieuwenhoff, Hélène W. P. ; Mesters, Ilse ; Nellissen, Joyce J. T. M. ; Stalenhoef, Anton F. ; Vries, Nanne K.</creatorcontrib><description>Inherited High Cholesterol is treatable, but highly underdiagnosed. To detect undiagnosed blood relatives at a presymptomatic stage, in the Netherlands written information packages are available to facilitate family communication. To investigate the role of those packages in the detection of carriers, we conducted a qualitative evaluation (plus‐minus method combined with semistructured interviews with index patients and relatives). Our data suggest that interviewees approved the family approach for finding carriers, although reluctantly. The packages aided family disclosure by reducing hesitation. However, index patients only informed first‐degree relatives and generally communicated the risk only once. This may be due to the cultural context and a limited understanding of genetics. For relatives the packages served as a cue to action and as a legitimation to gain access to a diagnostic cholesterol test. Despite the value of these written materials, they should not be used as the only communication between index patient and relatives.</description><identifier>ISSN: 1059-7700</identifier><identifier>EISSN: 1573-3599</identifier><identifier>DOI: 10.1007/s10897-005-9001-8</identifier><identifier>PMID: 16468088</identifier><language>eng</language><publisher>Boston: Springer US</publisher><subject>Adult ; Aged ; brochures ; Cholesterol ; disclosure ; familial combined hyperlipidemia ; familial hypercholesterolemia ; Families & family life ; family relations ; Genetic Carrier Screening ; Genetic counseling ; Genetic Predisposition to Disease ; genetic screening ; Genetic Testing ; Health education ; Humans ; Hyperlipoproteinemia Type II - genetics ; Interviews as Topic ; Middle Aged ; patient education ; Patient Education as Topic ; qualitative evaluation ; Risk factors</subject><ispartof>Journal of genetic counseling, 2006-02, Vol.15 (1), p.29-40</ispartof><rights>2006 National Society of Genetic Counselors, Inc.</rights><rights>Springer Science+Business Media, Inc. 2006</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c3639-d9de44040bfa733b19cf7b9715f37f1be36ee09832273d0197e53d5afee0ad913</citedby><cites>FETCH-LOGICAL-c3639-d9de44040bfa733b19cf7b9715f37f1be36ee09832273d0197e53d5afee0ad913</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1007%2Fs10897-005-9001-8$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1007%2Fs10897-005-9001-8$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,780,784,1416,12845,27923,27924,30998,45573,45574</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/16468088$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Nieuwenhoff, Hélène W. P.</creatorcontrib><creatorcontrib>Mesters, Ilse</creatorcontrib><creatorcontrib>Nellissen, Joyce J. T. M.</creatorcontrib><creatorcontrib>Stalenhoef, Anton F.</creatorcontrib><creatorcontrib>Vries, Nanne K.</creatorcontrib><title>The Importance of Written Information Packages in Support of Case‐Finding Within Families at Risk for Inherited High Cholesterol</title><title>Journal of genetic counseling</title><addtitle>J Genet Couns</addtitle><description>Inherited High Cholesterol is treatable, but highly underdiagnosed. To detect undiagnosed blood relatives at a presymptomatic stage, in the Netherlands written information packages are available to facilitate family communication. To investigate the role of those packages in the detection of carriers, we conducted a qualitative evaluation (plus‐minus method combined with semistructured interviews with index patients and relatives). Our data suggest that interviewees approved the family approach for finding carriers, although reluctantly. The packages aided family disclosure by reducing hesitation. However, index patients only informed first‐degree relatives and generally communicated the risk only once. This may be due to the cultural context and a limited understanding of genetics. For relatives the packages served as a cue to action and as a legitimation to gain access to a diagnostic cholesterol test. Despite the value of these written materials, they should not be used as the only communication between index patient and relatives.</description><subject>Adult</subject><subject>Aged</subject><subject>brochures</subject><subject>Cholesterol</subject><subject>disclosure</subject><subject>familial combined hyperlipidemia</subject><subject>familial hypercholesterolemia</subject><subject>Families & family life</subject><subject>family relations</subject><subject>Genetic Carrier Screening</subject><subject>Genetic counseling</subject><subject>Genetic Predisposition to Disease</subject><subject>genetic screening</subject><subject>Genetic Testing</subject><subject>Health education</subject><subject>Humans</subject><subject>Hyperlipoproteinemia Type II - genetics</subject><subject>Interviews as Topic</subject><subject>Middle Aged</subject><subject>patient education</subject><subject>Patient Education as Topic</subject><subject>qualitative evaluation</subject><subject>Risk factors</subject><issn>1059-7700</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2006</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNqFkc9q3DAQh0VpaP60D9BLET305mZkWZZ1LKabbAmktCk5CtkerZXY1layKbmVPEGfsU9SLbsQ6CUnDeKbb2b4EfKWwUcGIM8jg0rJDEBkCoBl1QtywoTkGRdKvUw1CJVJCXBMTmO8AwBVCfaKHLOyKCuoqhPyeNMjXY9bH2YztUi9pbfBzTNOdD1ZH0YzOz_Rr6a9NxuM1E30-7Ld4Tu0NhH__v6zclPnpg29dXOfgJUZ3eASbGb6zcV7mjzJ1mMSY0cv3aande8HjDMGP7wmR9YMEd8c3jPyY_X5pr7Mrq4v1vWnq6zlJVdZpzosCiigsUZy3jDVWtkoyYTl0rIGeYmYDuR5LnkHTEkUvBPGpl_TKcbPyIe9dxv8zyUN16OLLQ6DmdAvUZdS5aKE8lkwB5lLJkUC3_8H3vklTOkInbOqFCwtkSC2h9rgYwxo9Ta40YQHzUDvYtT7GHWKUe9i1FXqeXcQL82I3VPHIbcEyD3wyw348LxRf7moC4Bc8X8o7Kmz</recordid><startdate>200602</startdate><enddate>200602</enddate><creator>Nieuwenhoff, Hélène W. P.</creator><creator>Mesters, Ilse</creator><creator>Nellissen, Joyce J. T. M.</creator><creator>Stalenhoef, Anton F.</creator><creator>Vries, Nanne K.</creator><general>Springer US</general><general>Blackwell Publishing Ltd</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>0-V</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>8AO</scope><scope>8FD</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AN0</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>HEHIP</scope><scope>K9.</scope><scope>KB0</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2S</scope><scope>M7P</scope><scope>NAPCQ</scope><scope>P64</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>RC3</scope><scope>7U1</scope><scope>7U2</scope><scope>C1K</scope><scope>7X8</scope></search><sort><creationdate>200602</creationdate><title>The Importance of Written Information Packages in Support of Case‐Finding Within Families at Risk for Inherited High Cholesterol</title><author>Nieuwenhoff, Hélène W. P. ; Mesters, Ilse ; Nellissen, Joyce J. T. M. ; Stalenhoef, Anton F. ; Vries, Nanne K.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c3639-d9de44040bfa733b19cf7b9715f37f1be36ee09832273d0197e53d5afee0ad913</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2006</creationdate><topic>Adult</topic><topic>Aged</topic><topic>brochures</topic><topic>Cholesterol</topic><topic>disclosure</topic><topic>familial combined hyperlipidemia</topic><topic>familial hypercholesterolemia</topic><topic>Families & family life</topic><topic>family relations</topic><topic>Genetic Carrier Screening</topic><topic>Genetic counseling</topic><topic>Genetic Predisposition to Disease</topic><topic>genetic screening</topic><topic>Genetic Testing</topic><topic>Health education</topic><topic>Humans</topic><topic>Hyperlipoproteinemia Type II - genetics</topic><topic>Interviews as Topic</topic><topic>Middle Aged</topic><topic>patient education</topic><topic>Patient Education as Topic</topic><topic>qualitative evaluation</topic><topic>Risk factors</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Nieuwenhoff, Hélène W. P.</creatorcontrib><creatorcontrib>Mesters, Ilse</creatorcontrib><creatorcontrib>Nellissen, Joyce J. T. M.</creatorcontrib><creatorcontrib>Stalenhoef, Anton F.</creatorcontrib><creatorcontrib>Vries, Nanne K.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Social Sciences Premium Collection</collection><collection>ProQuest Central (Corporate)</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>Nursing & Allied Health Database</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>ProQuest Pharma Collection</collection><collection>Technology Research Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>Social Science Premium Collection</collection><collection>British Nursing Database</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Engineering Research Database</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>SciTech Premium Collection</collection><collection>Sociology Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>ProQuest Biological Science Collection</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Psychology Database</collection><collection>Sociology Database</collection><collection>Biological Science Database</collection><collection>Nursing & Allied Health Premium</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>Genetics Abstracts</collection><collection>Risk Abstracts</collection><collection>Safety Science and Risk</collection><collection>Environmental Sciences and Pollution Management</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of genetic counseling</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Nieuwenhoff, Hélène W. P.</au><au>Mesters, Ilse</au><au>Nellissen, Joyce J. T. M.</au><au>Stalenhoef, Anton F.</au><au>Vries, Nanne K.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The Importance of Written Information Packages in Support of Case‐Finding Within Families at Risk for Inherited High Cholesterol</atitle><jtitle>Journal of genetic counseling</jtitle><addtitle>J Genet Couns</addtitle><date>2006-02</date><risdate>2006</risdate><volume>15</volume><issue>1</issue><spage>29</spage><epage>40</epage><pages>29-40</pages><issn>1059-7700</issn><eissn>1573-3599</eissn><abstract>Inherited High Cholesterol is treatable, but highly underdiagnosed. To detect undiagnosed blood relatives at a presymptomatic stage, in the Netherlands written information packages are available to facilitate family communication. To investigate the role of those packages in the detection of carriers, we conducted a qualitative evaluation (plus‐minus method combined with semistructured interviews with index patients and relatives). Our data suggest that interviewees approved the family approach for finding carriers, although reluctantly. The packages aided family disclosure by reducing hesitation. However, index patients only informed first‐degree relatives and generally communicated the risk only once. This may be due to the cultural context and a limited understanding of genetics. For relatives the packages served as a cue to action and as a legitimation to gain access to a diagnostic cholesterol test. Despite the value of these written materials, they should not be used as the only communication between index patient and relatives.</abstract><cop>Boston</cop><pub>Springer US</pub><pmid>16468088</pmid><doi>10.1007/s10897-005-9001-8</doi><tpages>12</tpages><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1059-7700 |
| ispartof | Journal of genetic counseling, 2006-02, Vol.15 (1), p.29-40 |
| issn | 1059-7700 1573-3599 |
| language | eng |
| recordid | cdi_proquest_miscellaneous_67925606 |
| source | MEDLINE; Applied Social Sciences Index & Abstracts (ASSIA); Wiley Online Library All Journals; SpringerLink Journals - AutoHoldings |
| subjects | Adult Aged brochures Cholesterol disclosure familial combined hyperlipidemia familial hypercholesterolemia Families & family life family relations Genetic Carrier Screening Genetic counseling Genetic Predisposition to Disease genetic screening Genetic Testing Health education Humans Hyperlipoproteinemia Type II - genetics Interviews as Topic Middle Aged patient education Patient Education as Topic qualitative evaluation Risk factors |
| title | The Importance of Written Information Packages in Support of Case‐Finding Within Families at Risk for Inherited High Cholesterol |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-10T10%3A55%3A33IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_cross&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=The%20Importance%20of%20Written%20Information%20Packages%20in%20Support%20of%20Case%E2%80%90Finding%20Within%20Families%20at%20Risk%20for%20Inherited%20High%20Cholesterol&rft.jtitle=Journal%20of%20genetic%20counseling&rft.au=Nieuwenhoff,%20H%C3%A9l%C3%A8ne%20W.%20P.&rft.date=2006-02&rft.volume=15&rft.issue=1&rft.spage=29&rft.epage=40&rft.pages=29-40&rft.issn=1059-7700&rft.eissn=1573-3599&rft_id=info:doi/10.1007/s10897-005-9001-8&rft_dat=%3Cproquest_cross%3E67925606%3C/proquest_cross%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=218651197&rft_id=info:pmid/16468088&rfr_iscdi=true |