A model for patient-direct screening and referral for familial cancer risk
Patients at increased familial risk of cancer are sub-optimally identified and referred for genetic counseling. We describe a systematic model for information collection, screening and referral for hereditary cancer risk. Individuals from three different clinical and research populations were screen...
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| Veröffentlicht in: | Familial cancer 2016-10, Vol.15 (4), p.707-716 |
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| creator | Niendorf, Kristin B. Geller, Melissa A. Vogel, Rachel Isaksson Church, Timothy R. Leininger, Anna Bakke, Angela Madoff, Robert D. |
| description | Patients at increased familial risk of cancer are sub-optimally identified and referred for genetic counseling. We describe a systematic model for information collection, screening and referral for hereditary cancer risk. Individuals from three different clinical and research populations were screened for hereditary cancer risk using a two-tier process: a 7-item screener followed by review of family history by a genetic counselor and application of published criteria. A total of 869 subjects participated in the study; 769 in this high risk population had increased familial cancer risk based on the screening questionnaire. Of these eligible participants, 500 (65.0 %) provided family histories and 332 (66.4 %) of these were found to be at high risk of a hereditary cancer syndrome, 102 (20.4 %) at moderate familial cancer risk, and 66 (13.2 %) at average risk. Three months following receipt of the risk result letter, nearly all respondents found the process at least somewhat helpful (98.4 %). All participants identified as high-risk were mailed a letter recommending genetic counseling and were provided appointment tools. After 1 year, only 13 (7.3 %) of 179 high risk respondents reported pursuit of recommended genetic counseling. Participants were willing to provide family history information for the purposes of risk assessment; however, few patients pursued recommended genetic services. This suggests that cancer family history registries are feasible and viable but that further research is needed to increase the uptake of genetic counseling. |
| doi_str_mv | 10.1007/s10689-016-9912-6 |
| format | Article |
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We describe a systematic model for information collection, screening and referral for hereditary cancer risk. Individuals from three different clinical and research populations were screened for hereditary cancer risk using a two-tier process: a 7-item screener followed by review of family history by a genetic counselor and application of published criteria. A total of 869 subjects participated in the study; 769 in this high risk population had increased familial cancer risk based on the screening questionnaire. Of these eligible participants, 500 (65.0 %) provided family histories and 332 (66.4 %) of these were found to be at high risk of a hereditary cancer syndrome, 102 (20.4 %) at moderate familial cancer risk, and 66 (13.2 %) at average risk. Three months following receipt of the risk result letter, nearly all respondents found the process at least somewhat helpful (98.4 %). All participants identified as high-risk were mailed a letter recommending genetic counseling and were provided appointment tools. After 1 year, only 13 (7.3 %) of 179 high risk respondents reported pursuit of recommended genetic counseling. Participants were willing to provide family history information for the purposes of risk assessment; however, few patients pursued recommended genetic services. This suggests that cancer family history registries are feasible and viable but that further research is needed to increase the uptake of genetic counseling.</description><identifier>ISSN: 1389-9600</identifier><identifier>EISSN: 1573-7292</identifier><identifier>DOI: 10.1007/s10689-016-9912-6</identifier><identifier>PMID: 27350384</identifier><identifier>CODEN: FCAAAJ</identifier><language>eng</language><publisher>Dordrecht: Springer Netherlands</publisher><subject>Aged ; Biomedical and Life Sciences ; Biomedicine ; Cancer Research ; Epidemiology ; Female ; Follow-Up Studies ; Genetic Counseling ; Genetic Testing ; Human Genetics ; Humans ; Male ; Middle Aged ; Minnesota ; Models, Genetic ; Models, Theoretical ; Neoplastic Syndromes, Hereditary - genetics ; Original Article ; Referral and Consultation ; Registries ; Risk Assessment</subject><ispartof>Familial cancer, 2016-10, Vol.15 (4), p.707-716</ispartof><rights>Springer Science+Business Media Dordrecht 2016</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c503t-93e1d14d9b7a4f011941162e16e3e10c2b5efb1f1769be32adbc2427942834d53</citedby><cites>FETCH-LOGICAL-c503t-93e1d14d9b7a4f011941162e16e3e10c2b5efb1f1769be32adbc2427942834d53</cites><orcidid>0000-0001-6455-9944</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10689-016-9912-6$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10689-016-9912-6$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>230,314,780,784,885,27924,27925,41488,42557,51319</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/27350384$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Niendorf, Kristin B.</creatorcontrib><creatorcontrib>Geller, Melissa A.</creatorcontrib><creatorcontrib>Vogel, Rachel Isaksson</creatorcontrib><creatorcontrib>Church, Timothy R.</creatorcontrib><creatorcontrib>Leininger, Anna</creatorcontrib><creatorcontrib>Bakke, Angela</creatorcontrib><creatorcontrib>Madoff, Robert D.</creatorcontrib><title>A model for patient-direct screening and referral for familial cancer risk</title><title>Familial cancer</title><addtitle>Familial Cancer</addtitle><addtitle>Fam Cancer</addtitle><description>Patients at increased familial risk of cancer are sub-optimally identified and referred for genetic counseling. We describe a systematic model for information collection, screening and referral for hereditary cancer risk. Individuals from three different clinical and research populations were screened for hereditary cancer risk using a two-tier process: a 7-item screener followed by review of family history by a genetic counselor and application of published criteria. A total of 869 subjects participated in the study; 769 in this high risk population had increased familial cancer risk based on the screening questionnaire. Of these eligible participants, 500 (65.0 %) provided family histories and 332 (66.4 %) of these were found to be at high risk of a hereditary cancer syndrome, 102 (20.4 %) at moderate familial cancer risk, and 66 (13.2 %) at average risk. Three months following receipt of the risk result letter, nearly all respondents found the process at least somewhat helpful (98.4 %). All participants identified as high-risk were mailed a letter recommending genetic counseling and were provided appointment tools. After 1 year, only 13 (7.3 %) of 179 high risk respondents reported pursuit of recommended genetic counseling. Participants were willing to provide family history information for the purposes of risk assessment; however, few patients pursued recommended genetic services. This suggests that cancer family history registries are feasible and viable but that further research is needed to increase the uptake of genetic counseling.</description><subject>Aged</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Cancer Research</subject><subject>Epidemiology</subject><subject>Female</subject><subject>Follow-Up Studies</subject><subject>Genetic Counseling</subject><subject>Genetic Testing</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Minnesota</subject><subject>Models, Genetic</subject><subject>Models, Theoretical</subject><subject>Neoplastic Syndromes, Hereditary - genetics</subject><subject>Original Article</subject><subject>Referral and Consultation</subject><subject>Registries</subject><subject>Risk Assessment</subject><issn>1389-9600</issn><issn>1573-7292</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2016</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>8G5</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><sourceid>GUQSH</sourceid><sourceid>M2O</sourceid><recordid>eNqNkUFP3DAQha2qiKW0P4BLFakXLike27HjCxJCpYCQuMDZcpzJ1kvibO1spf57HAUQrYTEybbeNzPP8wg5AvodKFUnCaisdUlBlloDK-UHcgCV4qVimn3Md55VLSldkU8pbShllHG1T1ZM8YryWhyQ67NiGFvsi26MxdZOHsNUtj6im4rkImLwYV3Y0BYRO4zRLmRnB9_7_HA2OIxF9OnhM9nrbJ_wy9N5SO4vftydX5Y3tz-vzs9uSpdnTqXmCC2IVjfKio4CaAEgGYLErFDHmgq7BjpQUjfImW0bxwRTWrCai7bih-R06bvdNQO2LjvOtsw2-sHGv2a03vyrBP_LrMc_poJay5rnBsdPDeL4e4dpMoNPDvveBhx3yUCdp4HiXL8DBUWF0PVs69t_6GbcxZA3MVNSgKZcZgoWysUxpbzTF99AzRyqWUI1OVQzh2rmmq-vP_xS8ZxiBtgCpCyFNcZXo9_s-gia7avK</recordid><startdate>20161001</startdate><enddate>20161001</enddate><creator>Niendorf, Kristin B.</creator><creator>Geller, Melissa A.</creator><creator>Vogel, Rachel Isaksson</creator><creator>Church, Timothy R.</creator><creator>Leininger, Anna</creator><creator>Bakke, Angela</creator><creator>Madoff, Robert D.</creator><general>Springer Netherlands</general><general>Springer Nature B.V</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>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8AO</scope><scope>8FD</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>8G5</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>GUQSH</scope><scope>K9-</scope><scope>K9.</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>M2O</scope><scope>MBDVC</scope><scope>P64</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>Q9U</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-6455-9944</orcidid></search><sort><creationdate>20161001</creationdate><title>A model for patient-direct screening and referral for familial cancer risk</title><author>Niendorf, Kristin B. ; 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We describe a systematic model for information collection, screening and referral for hereditary cancer risk. Individuals from three different clinical and research populations were screened for hereditary cancer risk using a two-tier process: a 7-item screener followed by review of family history by a genetic counselor and application of published criteria. A total of 869 subjects participated in the study; 769 in this high risk population had increased familial cancer risk based on the screening questionnaire. Of these eligible participants, 500 (65.0 %) provided family histories and 332 (66.4 %) of these were found to be at high risk of a hereditary cancer syndrome, 102 (20.4 %) at moderate familial cancer risk, and 66 (13.2 %) at average risk. Three months following receipt of the risk result letter, nearly all respondents found the process at least somewhat helpful (98.4 %). All participants identified as high-risk were mailed a letter recommending genetic counseling and were provided appointment tools. After 1 year, only 13 (7.3 %) of 179 high risk respondents reported pursuit of recommended genetic counseling. Participants were willing to provide family history information for the purposes of risk assessment; however, few patients pursued recommended genetic services. This suggests that cancer family history registries are feasible and viable but that further research is needed to increase the uptake of genetic counseling.</abstract><cop>Dordrecht</cop><pub>Springer Netherlands</pub><pmid>27350384</pmid><doi>10.1007/s10689-016-9912-6</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0001-6455-9944</orcidid><oa>free_for_read</oa></addata></record> |
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| subjects | Aged Biomedical and Life Sciences Biomedicine Cancer Research Epidemiology Female Follow-Up Studies Genetic Counseling Genetic Testing Human Genetics Humans Male Middle Aged Minnesota Models, Genetic Models, Theoretical Neoplastic Syndromes, Hereditary - genetics Original Article Referral and Consultation Registries Risk Assessment |
| title | A model for patient-direct screening and referral for familial cancer risk |
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