Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy
Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorecto...
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| Veröffentlicht in: | Gynecologic oncology 2021-11, Vol.163 (2), p.371-377 |
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| creator | Steenbeek, Miranda P. van Bommel, Majke H.D. Harmsen, Marline G. Hoogerbrugge, Nicoline van Doorn, Helena C. Keurentjes, José H.M. van Beurden, Marc Zweemer, Ronald P. Gaarenstroom, Katja N. Penders, Charlotte G.J. Brood-van Zanten, Monique M.A. Vos, M. Caroline Piek, Jurgen M. van Lonkhuijzen, Luc R.C.W. Apperloo, Mirjam J.A. Coppus, Sjors F.P.J. IntHout, Joanna de Hullu, Joanne A. Hermens, Rosella P.M.G. |
| description | Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice.
Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA-study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision).
283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would recommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and cancer worry were similar in both cohorts.
The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly appreciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy.
•Novel salpingectomy was chosen more often than salpingo-oophorectomy and more often in women with than without decision aid.•The decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer preventive strategy was found feasible.•The decision aid is highly appreciated among both BRCA1/2 pathogenic variant carriers and their healthcare professionals.•Knowledge on cancer risk, decisional conflict and regret and cancer worry were equal in women with or without decision aid.•The decision aid was reported to increase knowledge about the preventive options and increase insight in personal values. |
| doi_str_mv | 10.1016/j.ygyno.2021.08.019 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_2566263317</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><els_id>S0090825821013172</els_id><sourcerecordid>2566263317</sourcerecordid><originalsourceid>FETCH-LOGICAL-c404t-59c42fc88e2a8db4603ae13e617198b982863a1abf6f4c6c1df2538d951d8e3d3</originalsourceid><addsrcrecordid>eNp9kMFqGzEQhkVpqN20T1AoOvaym5G0krWHHhLjpIVAIKRnIUuztoy9cqW1weTlo43THHsaMfPNP-gj5BuDmgFTV5v6tDr1sebAWQ26BtZ-IFMGrayUlu1HMgVoodJc6gn5nPMGAAQw_olMRNNIBXI2Jc-Lo90e7BBiT2NHLd2XN_YD9ehCHrs2eNrFRG8e59fsio_AOq6wD44ebQq2sM6mFDBl6tYx5tCvqC1p52kZ9g4T3Sc8ltwxMQ_JDrg6fSEXnd1m_PpWL8mf28XT_Fd1_3D3e359X7kGmqGSrWt457RGbrVfNgqERSZQsRlr9bLVXCthmV12qmuccsx3XArtW8m8RuHFJflxzt2n-PeAeTC7kB1ut7bHeMiGS6W4EoLNCirOqEsx54Sd2aews-lkGJjRutmYV-tmtG5Am2K9bH1_O3BY7tC_7_zTXICfZwDLN49FlcmuWHboQ0I3GB_Dfw-8AIZPlgA</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2566263317</pqid></control><display><type>article</type><title>Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy</title><source>MEDLINE</source><source>Access via ScienceDirect (Elsevier)</source><creator>Steenbeek, Miranda P. ; van Bommel, Majke H.D. ; Harmsen, Marline G. ; Hoogerbrugge, Nicoline ; van Doorn, Helena C. ; Keurentjes, José H.M. ; van Beurden, Marc ; Zweemer, Ronald P. ; Gaarenstroom, Katja N. ; Penders, Charlotte G.J. ; Brood-van Zanten, Monique M.A. ; Vos, M. Caroline ; Piek, Jurgen M. ; van Lonkhuijzen, Luc R.C.W. ; Apperloo, Mirjam J.A. ; Coppus, Sjors F.P.J. ; IntHout, Joanna ; de Hullu, Joanne A. ; Hermens, Rosella P.M.G.</creator><creatorcontrib>Steenbeek, Miranda P. ; van Bommel, Majke H.D. ; Harmsen, Marline G. ; Hoogerbrugge, Nicoline ; van Doorn, Helena C. ; Keurentjes, José H.M. ; van Beurden, Marc ; Zweemer, Ronald P. ; Gaarenstroom, Katja N. ; Penders, Charlotte G.J. ; Brood-van Zanten, Monique M.A. ; Vos, M. Caroline ; Piek, Jurgen M. ; van Lonkhuijzen, Luc R.C.W. ; Apperloo, Mirjam J.A. ; Coppus, Sjors F.P.J. ; IntHout, Joanna ; de Hullu, Joanne A. ; Hermens, Rosella P.M.G.</creatorcontrib><description>Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice.
Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA-study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision).
283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would recommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and cancer worry were similar in both cohorts.
The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly appreciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy.
•Novel salpingectomy was chosen more often than salpingo-oophorectomy and more often in women with than without decision aid.•The decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer preventive strategy was found feasible.•The decision aid is highly appreciated among both BRCA1/2 pathogenic variant carriers and their healthcare professionals.•Knowledge on cancer risk, decisional conflict and regret and cancer worry were equal in women with or without decision aid.•The decision aid was reported to increase knowledge about the preventive options and increase insight in personal values.</description><identifier>ISSN: 0090-8258</identifier><identifier>EISSN: 1095-6859</identifier><identifier>DOI: 10.1016/j.ygyno.2021.08.019</identifier><identifier>PMID: 34456057</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Adult ; BRCA ; BRCA1 Protein - genetics ; BRCA2 Protein - genetics ; Decision aid ; Decision Making ; Decision Support Techniques ; Feasibility Studies ; Female ; Genetic Predisposition to Disease ; Health Knowledge, Attitudes, Practice ; Heterozygote ; Humans ; Middle Aged ; Mutation ; Ovarian cancer ; Ovarian Neoplasms - genetics ; Ovarian Neoplasms - prevention & control ; Ovariectomy - psychology ; Ovariectomy - statistics & numerical data ; Patient Preference ; Prophylactic Surgical Procedures - psychology ; Prophylactic Surgical Procedures - statistics & numerical data ; Prospective Studies ; Risk-reducing salpingo-oophorectomy ; Salpingectomy ; Salpingectomy - psychology ; Salpingectomy - statistics & numerical data ; Salpingo-oophorectomy - psychology ; Salpingo-oophorectomy - statistics & numerical data</subject><ispartof>Gynecologic oncology, 2021-11, Vol.163 (2), p.371-377</ispartof><rights>2021 The Authors</rights><rights>Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c404t-59c42fc88e2a8db4603ae13e617198b982863a1abf6f4c6c1df2538d951d8e3d3</citedby><cites>FETCH-LOGICAL-c404t-59c42fc88e2a8db4603ae13e617198b982863a1abf6f4c6c1df2538d951d8e3d3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1016/j.ygyno.2021.08.019$$EHTML$$P50$$Gelsevier$$Hfree_for_read</linktohtml><link.rule.ids>314,780,784,3550,27924,27925,45995</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/34456057$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Steenbeek, Miranda P.</creatorcontrib><creatorcontrib>van Bommel, Majke H.D.</creatorcontrib><creatorcontrib>Harmsen, Marline G.</creatorcontrib><creatorcontrib>Hoogerbrugge, Nicoline</creatorcontrib><creatorcontrib>van Doorn, Helena C.</creatorcontrib><creatorcontrib>Keurentjes, José H.M.</creatorcontrib><creatorcontrib>van Beurden, Marc</creatorcontrib><creatorcontrib>Zweemer, Ronald P.</creatorcontrib><creatorcontrib>Gaarenstroom, Katja N.</creatorcontrib><creatorcontrib>Penders, Charlotte G.J.</creatorcontrib><creatorcontrib>Brood-van Zanten, Monique M.A.</creatorcontrib><creatorcontrib>Vos, M. Caroline</creatorcontrib><creatorcontrib>Piek, Jurgen M.</creatorcontrib><creatorcontrib>van Lonkhuijzen, Luc R.C.W.</creatorcontrib><creatorcontrib>Apperloo, Mirjam J.A.</creatorcontrib><creatorcontrib>Coppus, Sjors F.P.J.</creatorcontrib><creatorcontrib>IntHout, Joanna</creatorcontrib><creatorcontrib>de Hullu, Joanne A.</creatorcontrib><creatorcontrib>Hermens, Rosella P.M.G.</creatorcontrib><title>Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy</title><title>Gynecologic oncology</title><addtitle>Gynecol Oncol</addtitle><description>Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice.
Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA-study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision).
283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would recommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and cancer worry were similar in both cohorts.
The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly appreciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy.
•Novel salpingectomy was chosen more often than salpingo-oophorectomy and more often in women with than without decision aid.•The decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer preventive strategy was found feasible.•The decision aid is highly appreciated among both BRCA1/2 pathogenic variant carriers and their healthcare professionals.•Knowledge on cancer risk, decisional conflict and regret and cancer worry were equal in women with or without decision aid.•The decision aid was reported to increase knowledge about the preventive options and increase insight in personal values.</description><subject>Adult</subject><subject>BRCA</subject><subject>BRCA1 Protein - genetics</subject><subject>BRCA2 Protein - genetics</subject><subject>Decision aid</subject><subject>Decision Making</subject><subject>Decision Support Techniques</subject><subject>Feasibility Studies</subject><subject>Female</subject><subject>Genetic Predisposition to Disease</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Heterozygote</subject><subject>Humans</subject><subject>Middle Aged</subject><subject>Mutation</subject><subject>Ovarian cancer</subject><subject>Ovarian Neoplasms - genetics</subject><subject>Ovarian Neoplasms - prevention & control</subject><subject>Ovariectomy - psychology</subject><subject>Ovariectomy - statistics & numerical data</subject><subject>Patient Preference</subject><subject>Prophylactic Surgical Procedures - psychology</subject><subject>Prophylactic Surgical Procedures - statistics & numerical data</subject><subject>Prospective Studies</subject><subject>Risk-reducing salpingo-oophorectomy</subject><subject>Salpingectomy</subject><subject>Salpingectomy - psychology</subject><subject>Salpingectomy - statistics & numerical data</subject><subject>Salpingo-oophorectomy - psychology</subject><subject>Salpingo-oophorectomy - statistics & numerical data</subject><issn>0090-8258</issn><issn>1095-6859</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kMFqGzEQhkVpqN20T1AoOvaym5G0krWHHhLjpIVAIKRnIUuztoy9cqW1weTlo43THHsaMfPNP-gj5BuDmgFTV5v6tDr1sebAWQ26BtZ-IFMGrayUlu1HMgVoodJc6gn5nPMGAAQw_olMRNNIBXI2Jc-Lo90e7BBiT2NHLd2XN_YD9ehCHrs2eNrFRG8e59fsio_AOq6wD44ebQq2sM6mFDBl6tYx5tCvqC1p52kZ9g4T3Sc8ltwxMQ_JDrg6fSEXnd1m_PpWL8mf28XT_Fd1_3D3e359X7kGmqGSrWt457RGbrVfNgqERSZQsRlr9bLVXCthmV12qmuccsx3XArtW8m8RuHFJflxzt2n-PeAeTC7kB1ut7bHeMiGS6W4EoLNCirOqEsx54Sd2aews-lkGJjRutmYV-tmtG5Am2K9bH1_O3BY7tC_7_zTXICfZwDLN49FlcmuWHboQ0I3GB_Dfw-8AIZPlgA</recordid><startdate>202111</startdate><enddate>202111</enddate><creator>Steenbeek, Miranda P.</creator><creator>van Bommel, Majke H.D.</creator><creator>Harmsen, Marline G.</creator><creator>Hoogerbrugge, Nicoline</creator><creator>van Doorn, Helena C.</creator><creator>Keurentjes, José H.M.</creator><creator>van Beurden, Marc</creator><creator>Zweemer, Ronald P.</creator><creator>Gaarenstroom, Katja N.</creator><creator>Penders, Charlotte G.J.</creator><creator>Brood-van Zanten, Monique M.A.</creator><creator>Vos, M. Caroline</creator><creator>Piek, Jurgen M.</creator><creator>van Lonkhuijzen, Luc R.C.W.</creator><creator>Apperloo, Mirjam J.A.</creator><creator>Coppus, Sjors F.P.J.</creator><creator>IntHout, Joanna</creator><creator>de Hullu, Joanne A.</creator><creator>Hermens, Rosella P.M.G.</creator><general>Elsevier Inc</general><scope>6I.</scope><scope>AAFTH</scope><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>7X8</scope></search><sort><creationdate>202111</creationdate><title>Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy</title><author>Steenbeek, Miranda P. ; van Bommel, Majke H.D. ; Harmsen, Marline G. ; Hoogerbrugge, Nicoline ; van Doorn, Helena C. ; Keurentjes, José H.M. ; van Beurden, Marc ; Zweemer, Ronald P. ; Gaarenstroom, Katja N. ; Penders, Charlotte G.J. ; Brood-van Zanten, Monique M.A. ; Vos, M. Caroline ; Piek, Jurgen M. ; van Lonkhuijzen, Luc R.C.W. ; Apperloo, Mirjam J.A. ; Coppus, Sjors F.P.J. ; IntHout, Joanna ; de Hullu, Joanne A. ; Hermens, Rosella P.M.G.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c404t-59c42fc88e2a8db4603ae13e617198b982863a1abf6f4c6c1df2538d951d8e3d3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>Adult</topic><topic>BRCA</topic><topic>BRCA1 Protein - genetics</topic><topic>BRCA2 Protein - genetics</topic><topic>Decision aid</topic><topic>Decision Making</topic><topic>Decision Support Techniques</topic><topic>Feasibility Studies</topic><topic>Female</topic><topic>Genetic Predisposition to Disease</topic><topic>Health Knowledge, Attitudes, Practice</topic><topic>Heterozygote</topic><topic>Humans</topic><topic>Middle Aged</topic><topic>Mutation</topic><topic>Ovarian cancer</topic><topic>Ovarian Neoplasms - genetics</topic><topic>Ovarian Neoplasms - prevention & control</topic><topic>Ovariectomy - psychology</topic><topic>Ovariectomy - statistics & numerical data</topic><topic>Patient Preference</topic><topic>Prophylactic Surgical Procedures - psychology</topic><topic>Prophylactic Surgical Procedures - statistics & numerical data</topic><topic>Prospective Studies</topic><topic>Risk-reducing salpingo-oophorectomy</topic><topic>Salpingectomy</topic><topic>Salpingectomy - psychology</topic><topic>Salpingectomy - statistics & numerical data</topic><topic>Salpingo-oophorectomy - psychology</topic><topic>Salpingo-oophorectomy - statistics & numerical data</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Steenbeek, Miranda P.</creatorcontrib><creatorcontrib>van Bommel, Majke H.D.</creatorcontrib><creatorcontrib>Harmsen, Marline G.</creatorcontrib><creatorcontrib>Hoogerbrugge, Nicoline</creatorcontrib><creatorcontrib>van Doorn, Helena C.</creatorcontrib><creatorcontrib>Keurentjes, José H.M.</creatorcontrib><creatorcontrib>van Beurden, Marc</creatorcontrib><creatorcontrib>Zweemer, Ronald P.</creatorcontrib><creatorcontrib>Gaarenstroom, Katja N.</creatorcontrib><creatorcontrib>Penders, Charlotte G.J.</creatorcontrib><creatorcontrib>Brood-van Zanten, Monique M.A.</creatorcontrib><creatorcontrib>Vos, M. Caroline</creatorcontrib><creatorcontrib>Piek, Jurgen M.</creatorcontrib><creatorcontrib>van Lonkhuijzen, Luc R.C.W.</creatorcontrib><creatorcontrib>Apperloo, Mirjam J.A.</creatorcontrib><creatorcontrib>Coppus, Sjors F.P.J.</creatorcontrib><creatorcontrib>IntHout, Joanna</creatorcontrib><creatorcontrib>de Hullu, Joanne A.</creatorcontrib><creatorcontrib>Hermens, Rosella P.M.G.</creatorcontrib><collection>ScienceDirect Open Access Titles</collection><collection>Elsevier:ScienceDirect:Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Gynecologic oncology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Steenbeek, Miranda P.</au><au>van Bommel, Majke H.D.</au><au>Harmsen, Marline G.</au><au>Hoogerbrugge, Nicoline</au><au>van Doorn, Helena C.</au><au>Keurentjes, José H.M.</au><au>van Beurden, Marc</au><au>Zweemer, Ronald P.</au><au>Gaarenstroom, Katja N.</au><au>Penders, Charlotte G.J.</au><au>Brood-van Zanten, Monique M.A.</au><au>Vos, M. Caroline</au><au>Piek, Jurgen M.</au><au>van Lonkhuijzen, Luc R.C.W.</au><au>Apperloo, Mirjam J.A.</au><au>Coppus, Sjors F.P.J.</au><au>IntHout, Joanna</au><au>de Hullu, Joanne A.</au><au>Hermens, Rosella P.M.G.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy</atitle><jtitle>Gynecologic oncology</jtitle><addtitle>Gynecol Oncol</addtitle><date>2021-11</date><risdate>2021</risdate><volume>163</volume><issue>2</issue><spage>371</spage><epage>377</epage><pages>371-377</pages><issn>0090-8258</issn><eissn>1095-6859</eissn><abstract>Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice.
Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA-study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision).
283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would recommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and cancer worry were similar in both cohorts.
The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly appreciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy.
•Novel salpingectomy was chosen more often than salpingo-oophorectomy and more often in women with than without decision aid.•The decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer preventive strategy was found feasible.•The decision aid is highly appreciated among both BRCA1/2 pathogenic variant carriers and their healthcare professionals.•Knowledge on cancer risk, decisional conflict and regret and cancer worry were equal in women with or without decision aid.•The decision aid was reported to increase knowledge about the preventive options and increase insight in personal values.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>34456057</pmid><doi>10.1016/j.ygyno.2021.08.019</doi><tpages>7</tpages><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0090-8258 |
| ispartof | Gynecologic oncology, 2021-11, Vol.163 (2), p.371-377 |
| issn | 0090-8258 1095-6859 |
| language | eng |
| recordid | cdi_proquest_miscellaneous_2566263317 |
| source | MEDLINE; Access via ScienceDirect (Elsevier) |
| subjects | Adult BRCA BRCA1 Protein - genetics BRCA2 Protein - genetics Decision aid Decision Making Decision Support Techniques Feasibility Studies Female Genetic Predisposition to Disease Health Knowledge, Attitudes, Practice Heterozygote Humans Middle Aged Mutation Ovarian cancer Ovarian Neoplasms - genetics Ovarian Neoplasms - prevention & control Ovariectomy - psychology Ovariectomy - statistics & numerical data Patient Preference Prophylactic Surgical Procedures - psychology Prophylactic Surgical Procedures - statistics & numerical data Prospective Studies Risk-reducing salpingo-oophorectomy Salpingectomy Salpingectomy - psychology Salpingectomy - statistics & numerical data Salpingo-oophorectomy - psychology Salpingo-oophorectomy - statistics & numerical data |
| title | Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2024-12-19T13%3A52%3A46IST&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=Evaluation%20of%20a%20patient%20decision%20aid%20for%20BRCA1/2%20pathogenic%20variant%20carriers%20choosing%20an%20ovarian%20cancer%20prevention%20strategy&rft.jtitle=Gynecologic%20oncology&rft.au=Steenbeek,%20Miranda%20P.&rft.date=2021-11&rft.volume=163&rft.issue=2&rft.spage=371&rft.epage=377&rft.pages=371-377&rft.issn=0090-8258&rft.eissn=1095-6859&rft_id=info:doi/10.1016/j.ygyno.2021.08.019&rft_dat=%3Cproquest_cross%3E2566263317%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=2566263317&rft_id=info:pmid/34456057&rft_els_id=S0090825821013172&rfr_iscdi=true |