Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter
Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services a...
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| Veröffentlicht in: | Journal of genetic counseling 2017-08, Vol.26 (4), p.697-715 |
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| container_title | Journal of genetic counseling |
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| creator | Kne, Alyssa Zierhut, Heather Baldinger, Shari Swenson, Karen K. Mink, Pamela Veach, Patricia McCarthy Tsai, Michaela L. |
| description | Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services are underutilized by atrisk patients. This study aimed to: (1) determine the rate of genetic counseling utilization following a referral letter, (2) characterize factors (barriers and supports) which influenced uptake of services, and (3) identify potential strategies for increasing utilization. This study evaluated the uptake of cancer genetic counseling among 603 screening mammography patients identified as having an increased risk for HBOC based on National Comprehensive Cancer Network (NCCN) guidelines. At risk individuals and their primary care providers were mailed a referral letter recommending genetic counseling. Three focus groups (
N
= 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services. |
| doi_str_mv | 10.1007/s10897-016-0040-0 |
| format | Article |
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N
= 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services.</description><identifier>ISSN: 1059-7700</identifier><identifier>EISSN: 1573-3599</identifier><identifier>DOI: 10.1007/s10897-016-0040-0</identifier><identifier>PMID: 27826805</identifier><language>eng</language><publisher>New York: Springer US</publisher><subject>Adult ; Aged ; Aged, 80 and over ; At risk populations ; Barriers ; Biomedical and Life Sciences ; Biomedicine ; Breast cancer ; Breast Neoplasms - diagnosis ; Breast Neoplasms - genetics ; Cancer genetic counseling ; Clinical Psychology ; Counseling services ; Ethics ; Female ; Genetic counseling ; Genetic Counseling - utilization ; Gynecology ; Health education ; Health Knowledge, Attitudes, Practice ; Health Services Accessibility ; Hereditary breast and ovarian cancer ; Human Genetics ; Humans ; Insurance coverage ; Mammography ; Middle Aged ; Original Research ; Ovarian cancer ; Ovarian Neoplasms - diagnosis ; Ovarian Neoplasms - genetics ; Patient communication ; Patients ; Prenatal development ; Primary care ; Professional associations ; Public Health ; Referral and Consultation - utilization ; Supports ; Uptake ; Utilization ; Women</subject><ispartof>Journal of genetic counseling, 2017-08, Vol.26 (4), p.697-715</ispartof><rights>National Society of Genetic Counselors, Inc. 2016</rights><rights>2017 National Society of Genetic Counselors, Inc.</rights><rights>Journal of Genetic Counseling is a copyright of Springer, 2017.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4637-27d5af9ac6881fef48dd45afbcaac3738c65cbf0e489d8bebd8428a53a053db33</citedby><cites>FETCH-LOGICAL-c4637-27d5af9ac6881fef48dd45afbcaac3738c65cbf0e489d8bebd8428a53a053db33</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10897-016-0040-0$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10897-016-0040-0$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>314,780,784,1416,12845,27923,27924,30998,41487,42556,45573,45574,51318</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/27826805$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Kne, Alyssa</creatorcontrib><creatorcontrib>Zierhut, Heather</creatorcontrib><creatorcontrib>Baldinger, Shari</creatorcontrib><creatorcontrib>Swenson, Karen K.</creatorcontrib><creatorcontrib>Mink, Pamela</creatorcontrib><creatorcontrib>Veach, Patricia McCarthy</creatorcontrib><creatorcontrib>Tsai, Michaela L.</creatorcontrib><title>Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter</title><title>Journal of genetic counseling</title><addtitle>J Genet Counsel</addtitle><addtitle>J Genet Couns</addtitle><description>Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services are underutilized by atrisk patients. This study aimed to: (1) determine the rate of genetic counseling utilization following a referral letter, (2) characterize factors (barriers and supports) which influenced uptake of services, and (3) identify potential strategies for increasing utilization. This study evaluated the uptake of cancer genetic counseling among 603 screening mammography patients identified as having an increased risk for HBOC based on National Comprehensive Cancer Network (NCCN) guidelines. At risk individuals and their primary care providers were mailed a referral letter recommending genetic counseling. Three focus groups (
N
= 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services.</description><subject>Adult</subject><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>At risk populations</subject><subject>Barriers</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Breast cancer</subject><subject>Breast Neoplasms - diagnosis</subject><subject>Breast Neoplasms - genetics</subject><subject>Cancer genetic counseling</subject><subject>Clinical Psychology</subject><subject>Counseling services</subject><subject>Ethics</subject><subject>Female</subject><subject>Genetic counseling</subject><subject>Genetic Counseling - utilization</subject><subject>Gynecology</subject><subject>Health education</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Health Services Accessibility</subject><subject>Hereditary breast and ovarian cancer</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Insurance coverage</subject><subject>Mammography</subject><subject>Middle Aged</subject><subject>Original Research</subject><subject>Ovarian cancer</subject><subject>Ovarian Neoplasms - diagnosis</subject><subject>Ovarian Neoplasms - genetics</subject><subject>Patient communication</subject><subject>Patients</subject><subject>Prenatal development</subject><subject>Primary care</subject><subject>Professional associations</subject><subject>Public Health</subject><subject>Referral and Consultation - utilization</subject><subject>Supports</subject><subject>Uptake</subject><subject>Utilization</subject><subject>Women</subject><issn>1059-7700</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2017</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>eNqFkV1rFDEUhgdRbK3-AG8k4I03oyc7H0muxA52u7JgKZZehkxypqbOJtskQ1n_UP9ms8wqIohXCYfneXPIWxSvKbynAOxDpMAFK4G2JUANJTwpjmnDqrJqhHia79CIkjGAo-JFjLcAIHhDnxdHC8YXLYfmuHi4_r4jq0g65TQGskSHyWrS-clFHK27IVfOYJiSHe1PNKTfkWu_QUdWBl2yg80zFYlK5NLGH2TwgZxjQGOTCjtyGlDFdAj_SC5UstkiFxg0bpP1LhI_kFMVgsUQyZkfR3-_f1SRSxwwBDWSNaaE4WXxbFBjxFeH86S4Ovv8rTsv11-Xq-7TutR1W7FywUyjBqF0yzkdcKi5MXWe9FopXbGK67bR_QBYc2F4j73h9YKrplLQVKavqpPi3Zy7Df5uwpjkxkaN46gc-ilKyitBgQmgGX37F3rrp-DydpIKyijlooVM0ZnSwccYcJDbYDf5cyQFuW9Rzi3K3KLctyj3zptD8tRv0Pw2ftWWATYD93bE3f8T5ZdlV0MrWDYXsxmz5G4w_LH0P_d5BHRMuiY</recordid><startdate>201708</startdate><enddate>201708</enddate><creator>Kne, Alyssa</creator><creator>Zierhut, Heather</creator><creator>Baldinger, Shari</creator><creator>Swenson, Karen K.</creator><creator>Mink, Pamela</creator><creator>Veach, Patricia McCarthy</creator><creator>Tsai, Michaela L.</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>PSYQQ</scope><scope>Q9U</scope><scope>RC3</scope><scope>7X8</scope></search><sort><creationdate>201708</creationdate><title>Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? 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Patient Perceptions of Barriers Following a Referral Letter</atitle><jtitle>Journal of genetic counseling</jtitle><stitle>J Genet Counsel</stitle><addtitle>J Genet Couns</addtitle><date>2017-08</date><risdate>2017</risdate><volume>26</volume><issue>4</issue><spage>697</spage><epage>715</epage><pages>697-715</pages><issn>1059-7700</issn><eissn>1573-3599</eissn><abstract>Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services are underutilized by atrisk patients. This study aimed to: (1) determine the rate of genetic counseling utilization following a referral letter, (2) characterize factors (barriers and supports) which influenced uptake of services, and (3) identify potential strategies for increasing utilization. This study evaluated the uptake of cancer genetic counseling among 603 screening mammography patients identified as having an increased risk for HBOC based on National Comprehensive Cancer Network (NCCN) guidelines. At risk individuals and their primary care providers were mailed a referral letter recommending genetic counseling. Three focus groups (
N
= 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services.</abstract><cop>New York</cop><pub>Springer US</pub><pmid>27826805</pmid><doi>10.1007/s10897-016-0040-0</doi><tpages>19</tpages><oa>free_for_read</oa></addata></record> |
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| ispartof | Journal of genetic counseling, 2017-08, Vol.26 (4), p.697-715 |
| issn | 1059-7700 1573-3599 |
| language | eng |
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| source | Wiley-Blackwell Journals; MEDLINE; Applied Social Sciences Index & Abstracts (ASSIA); SpringerLink Journals - AutoHoldings |
| subjects | Adult Aged Aged, 80 and over At risk populations Barriers Biomedical and Life Sciences Biomedicine Breast cancer Breast Neoplasms - diagnosis Breast Neoplasms - genetics Cancer genetic counseling Clinical Psychology Counseling services Ethics Female Genetic counseling Genetic Counseling - utilization Gynecology Health education Health Knowledge, Attitudes, Practice Health Services Accessibility Hereditary breast and ovarian cancer Human Genetics Humans Insurance coverage Mammography Middle Aged Original Research Ovarian cancer Ovarian Neoplasms - diagnosis Ovarian Neoplasms - genetics Patient communication Patients Prenatal development Primary care Professional associations Public Health Referral and Consultation - utilization Supports Uptake Utilization Women |
| title | Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter |
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