Management of Gonads in Adults with Androgen Insensitivity: An International Survey
Background: Complete and partial androgen insensitivity syndrome (CAIS, PAIS) are associated with an increased risk of gonadal germ cell cancer (GGCC). Recent guidelines recommend gonadectomy in women with CAIS in late adolescence. Nevertheless, many adult women prefer to retain their gonads. Aims:...
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| Veröffentlicht in: | Hormone research in paediatrics 2018-01, Vol.90 (4), p.236-246 |
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| creator | Tack, Lloyd J.W. Maris, Ellen Looijenga, Leendert H.J. Hannema, Sabine E. Audi, Laura Köhler, Birgit Holterhus, Paul-Martin Riedl, Stefan Wisniewski, Amy Flück, Christa E. Davies, Justin H. T'Sjoen, Guy Lucas-Herald , Angela K. Evliyaoglu, Olcay Krone, Nils Iotova, Violeta Marginean, Otilia Balsamo, Antonio Verkauskas, Gilvydas Weintrob, Naomi Ellaithi, Mona Nordenström, Anna Verrijn Stuart , Annemarie Kluivers, Kirsten B. Wolffenbuttel, Katja P. Ahmed, S. Faisal Cools, Martine |
| description | Background: Complete and partial androgen insensitivity syndrome (CAIS, PAIS) are associated with an increased risk of gonadal germ cell cancer (GGCC). Recent guidelines recommend gonadectomy in women with CAIS in late adolescence. Nevertheless, many adult women prefer to retain their gonads. Aims: This study aims to explore attitudes towards gonadectomy in AIS in centres around the world, estimate the proportion of adults with retained gonads and/or who developed GGCC, and explore reasons for declining gonadectomy. Methods: A survey was performed among health care professionals who use the International DSD Registry (I-DSD). Results: Data were provided from 22 centres in 16 countries on 166 women (CAIS) and 26 men (PAIS). In CAIS, gonadectomy was recommended in early adulthood in 67% of centres; 19/166 (11.4%) women refused gonadectomy. Among 142 women who had gonadectomy, evidence of germ cell neoplasm in situ (GCNIS), the precursor of GGCC, was reported in 2 (1.4%) out of 8 from whom pathology results were formally provided. Nine out of 26 men with PAIS (34.6%) had retained gonads; 11% of centres recommended routine gonadectomy in PAIS. Conclusion: Although development of GGCC seems rare, gonadectomy after puberty is broadly recommended in CAIS; in PAIS this is more variable. Overall, our data reflect the need for evidence-based guidelines regarding prophylactic gonadectomy in AIS. |
| doi_str_mv | 10.1159/000493645 |
| format | Article |
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Faisal ; Cools, Martine</creator><creatorcontrib>Tack, Lloyd J.W. ; Maris, Ellen ; Looijenga, Leendert H.J. ; Hannema, Sabine E. ; Audi, Laura ; Köhler, Birgit ; Holterhus, Paul-Martin ; Riedl, Stefan ; Wisniewski, Amy ; Flück, Christa E. ; Davies, Justin H. ; T'Sjoen, Guy ; Lucas-Herald , Angela K. ; Evliyaoglu, Olcay ; Krone, Nils ; Iotova, Violeta ; Marginean, Otilia ; Balsamo, Antonio ; Verkauskas, Gilvydas ; Weintrob, Naomi ; Ellaithi, Mona ; Nordenström, Anna ; Verrijn Stuart , Annemarie ; Kluivers, Kirsten B. ; Wolffenbuttel, Katja P. ; Ahmed, S. Faisal ; Cools, Martine</creatorcontrib><description>Background: Complete and partial androgen insensitivity syndrome (CAIS, PAIS) are associated with an increased risk of gonadal germ cell cancer (GGCC). Recent guidelines recommend gonadectomy in women with CAIS in late adolescence. Nevertheless, many adult women prefer to retain their gonads. Aims: This study aims to explore attitudes towards gonadectomy in AIS in centres around the world, estimate the proportion of adults with retained gonads and/or who developed GGCC, and explore reasons for declining gonadectomy. Methods: A survey was performed among health care professionals who use the International DSD Registry (I-DSD). Results: Data were provided from 22 centres in 16 countries on 166 women (CAIS) and 26 men (PAIS). In CAIS, gonadectomy was recommended in early adulthood in 67% of centres; 19/166 (11.4%) women refused gonadectomy. Among 142 women who had gonadectomy, evidence of germ cell neoplasm in situ (GCNIS), the precursor of GGCC, was reported in 2 (1.4%) out of 8 from whom pathology results were formally provided. Nine out of 26 men with PAIS (34.6%) had retained gonads; 11% of centres recommended routine gonadectomy in PAIS. Conclusion: Although development of GGCC seems rare, gonadectomy after puberty is broadly recommended in CAIS; in PAIS this is more variable. Overall, our data reflect the need for evidence-based guidelines regarding prophylactic gonadectomy in AIS.</description><identifier>ISSN: 1663-2818</identifier><identifier>EISSN: 1663-2826</identifier><identifier>DOI: 10.1159/000493645</identifier><identifier>PMID: 30336477</identifier><language>eng</language><publisher>Basel, Switzerland</publisher><subject>Adolescent ; Adult ; Androgen-Insensitivity Syndrome - pathology ; Androgen-Insensitivity Syndrome - surgery ; Female ; Humans ; Male ; Neoplasms, Germ Cell and Embryonal - pathology ; Neoplasms, Germ Cell and Embryonal - prevention & control ; Orchiectomy ; Original Paper ; Ovarian Neoplasms - pathology ; Ovarian Neoplasms - prevention & control ; Ovariectomy ; Ovary - pathology ; Ovary - surgery ; Registries ; Testicular Neoplasms - pathology ; Testicular Neoplasms - prevention & control ; Testis - pathology ; Testis - surgery</subject><ispartof>Hormone research in paediatrics, 2018-01, Vol.90 (4), p.236-246</ispartof><rights>2018 S. Karger AG, Basel</rights><rights>2018 S. Karger AG, Basel.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c407t-6b80c15fb6c1d62c87865845046cf5efcd6342b927d2f986b1c386cb2a9a80803</citedby><cites>FETCH-LOGICAL-c407t-6b80c15fb6c1d62c87865845046cf5efcd6342b927d2f986b1c386cb2a9a80803</cites><orcidid>0000-0003-0405-3401</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,550,776,780,881,2423,27901,27902</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30336477$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink><backlink>$$Uhttp://kipublications.ki.se/Default.aspx?queryparsed=id:140055562$$DView record from Swedish Publication Index$$Hfree_for_read</backlink></links><search><creatorcontrib>Tack, Lloyd J.W.</creatorcontrib><creatorcontrib>Maris, Ellen</creatorcontrib><creatorcontrib>Looijenga, Leendert H.J.</creatorcontrib><creatorcontrib>Hannema, Sabine E.</creatorcontrib><creatorcontrib>Audi, Laura</creatorcontrib><creatorcontrib>Köhler, Birgit</creatorcontrib><creatorcontrib>Holterhus, Paul-Martin</creatorcontrib><creatorcontrib>Riedl, Stefan</creatorcontrib><creatorcontrib>Wisniewski, Amy </creatorcontrib><creatorcontrib>Flück, Christa E.</creatorcontrib><creatorcontrib>Davies, Justin H.</creatorcontrib><creatorcontrib>T'Sjoen, Guy</creatorcontrib><creatorcontrib>Lucas-Herald , Angela K.</creatorcontrib><creatorcontrib>Evliyaoglu, Olcay</creatorcontrib><creatorcontrib>Krone, Nils</creatorcontrib><creatorcontrib>Iotova, Violeta</creatorcontrib><creatorcontrib>Marginean, Otilia</creatorcontrib><creatorcontrib>Balsamo, Antonio</creatorcontrib><creatorcontrib>Verkauskas, Gilvydas</creatorcontrib><creatorcontrib>Weintrob, Naomi</creatorcontrib><creatorcontrib>Ellaithi, Mona</creatorcontrib><creatorcontrib>Nordenström, Anna</creatorcontrib><creatorcontrib>Verrijn Stuart , Annemarie</creatorcontrib><creatorcontrib>Kluivers, Kirsten B.</creatorcontrib><creatorcontrib>Wolffenbuttel, Katja P.</creatorcontrib><creatorcontrib>Ahmed, S. Faisal</creatorcontrib><creatorcontrib>Cools, Martine</creatorcontrib><title>Management of Gonads in Adults with Androgen Insensitivity: An International Survey</title><title>Hormone research in paediatrics</title><addtitle>Horm Res Paediatr</addtitle><description>Background: Complete and partial androgen insensitivity syndrome (CAIS, PAIS) are associated with an increased risk of gonadal germ cell cancer (GGCC). Recent guidelines recommend gonadectomy in women with CAIS in late adolescence. Nevertheless, many adult women prefer to retain their gonads. Aims: This study aims to explore attitudes towards gonadectomy in AIS in centres around the world, estimate the proportion of adults with retained gonads and/or who developed GGCC, and explore reasons for declining gonadectomy. Methods: A survey was performed among health care professionals who use the International DSD Registry (I-DSD). Results: Data were provided from 22 centres in 16 countries on 166 women (CAIS) and 26 men (PAIS). In CAIS, gonadectomy was recommended in early adulthood in 67% of centres; 19/166 (11.4%) women refused gonadectomy. Among 142 women who had gonadectomy, evidence of germ cell neoplasm in situ (GCNIS), the precursor of GGCC, was reported in 2 (1.4%) out of 8 from whom pathology results were formally provided. Nine out of 26 men with PAIS (34.6%) had retained gonads; 11% of centres recommended routine gonadectomy in PAIS. Conclusion: Although development of GGCC seems rare, gonadectomy after puberty is broadly recommended in CAIS; in PAIS this is more variable. Overall, our data reflect the need for evidence-based guidelines regarding prophylactic gonadectomy in AIS.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Androgen-Insensitivity Syndrome - pathology</subject><subject>Androgen-Insensitivity Syndrome - surgery</subject><subject>Female</subject><subject>Humans</subject><subject>Male</subject><subject>Neoplasms, Germ Cell and Embryonal - pathology</subject><subject>Neoplasms, Germ Cell and Embryonal - prevention & control</subject><subject>Orchiectomy</subject><subject>Original Paper</subject><subject>Ovarian Neoplasms - pathology</subject><subject>Ovarian Neoplasms - prevention & control</subject><subject>Ovariectomy</subject><subject>Ovary - pathology</subject><subject>Ovary - surgery</subject><subject>Registries</subject><subject>Testicular Neoplasms - pathology</subject><subject>Testicular Neoplasms - prevention & control</subject><subject>Testis - pathology</subject><subject>Testis - surgery</subject><issn>1663-2818</issn><issn>1663-2826</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>D8T</sourceid><recordid>eNpt0M1LwzAYBvAgihvqwbtIwYseqvlok9TbEHXCRHF6DmmazmiXziR17L830tmTp7y8-b3P4QHgGMFLhPLiCkKYFYRm-Q4YI0pJijmmu8OM-Agcef8RGSScFYjtgxGBJF4wNgbzR2nlQi-1DUlbJ_etlZVPjE0mVdcEn6xNeE8mtnLtQtvkwXptvQnm24TNddzHTdDOymDiYZPMO_etN4dgr5aN10fb9wC83d2-3kzT2dP9w81klqoMspDSkkOF8rqkClUUK844zXmWw4yqOte1qijJcFlgVuG64LREinCqSiwLySGH5ACkfa5f61VXipUzS-k2opVGbFefcdIi41nMjv689yvXfnXaB7E0XummkVa3nRcYYcJQDtkvveipcq33TtdDOILit3Yx1B7t6Ta2K5e6GuRfyRGc9OBTuoV2Axjuz_79nr4890Ksqpr8AAVdkU8</recordid><startdate>20180101</startdate><enddate>20180101</enddate><creator>Tack, Lloyd J.W.</creator><creator>Maris, Ellen</creator><creator>Looijenga, Leendert H.J.</creator><creator>Hannema, Sabine E.</creator><creator>Audi, Laura</creator><creator>Köhler, Birgit</creator><creator>Holterhus, Paul-Martin</creator><creator>Riedl, Stefan</creator><creator>Wisniewski, Amy </creator><creator>Flück, Christa E.</creator><creator>Davies, Justin H.</creator><creator>T'Sjoen, Guy</creator><creator>Lucas-Herald , Angela K.</creator><creator>Evliyaoglu, Olcay</creator><creator>Krone, Nils</creator><creator>Iotova, Violeta</creator><creator>Marginean, Otilia</creator><creator>Balsamo, Antonio</creator><creator>Verkauskas, Gilvydas</creator><creator>Weintrob, Naomi</creator><creator>Ellaithi, Mona</creator><creator>Nordenström, Anna</creator><creator>Verrijn Stuart , Annemarie</creator><creator>Kluivers, Kirsten B.</creator><creator>Wolffenbuttel, Katja P.</creator><creator>Ahmed, S. Faisal</creator><creator>Cools, Martine</creator><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><scope>ADTPV</scope><scope>AOWAS</scope><scope>D8T</scope><scope>ZZAVC</scope><orcidid>https://orcid.org/0000-0003-0405-3401</orcidid></search><sort><creationdate>20180101</creationdate><title>Management of Gonads in Adults with Androgen Insensitivity: An International Survey</title><author>Tack, Lloyd J.W. ; Maris, Ellen ; Looijenga, Leendert H.J. ; Hannema, Sabine E. ; Audi, Laura ; Köhler, Birgit ; Holterhus, Paul-Martin ; Riedl, Stefan ; Wisniewski, Amy ; Flück, Christa E. ; Davies, Justin H. ; T'Sjoen, Guy ; Lucas-Herald , Angela K. ; Evliyaoglu, Olcay ; Krone, Nils ; Iotova, Violeta ; Marginean, Otilia ; Balsamo, Antonio ; Verkauskas, Gilvydas ; Weintrob, Naomi ; Ellaithi, Mona ; Nordenström, Anna ; Verrijn Stuart , Annemarie ; Kluivers, Kirsten B. ; Wolffenbuttel, Katja P. ; Ahmed, S. Faisal ; Cools, Martine</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c407t-6b80c15fb6c1d62c87865845046cf5efcd6342b927d2f986b1c386cb2a9a80803</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Androgen-Insensitivity Syndrome - pathology</topic><topic>Androgen-Insensitivity Syndrome - surgery</topic><topic>Female</topic><topic>Humans</topic><topic>Male</topic><topic>Neoplasms, Germ Cell and Embryonal - pathology</topic><topic>Neoplasms, Germ Cell and Embryonal - prevention & control</topic><topic>Orchiectomy</topic><topic>Original Paper</topic><topic>Ovarian Neoplasms - pathology</topic><topic>Ovarian Neoplasms - prevention & control</topic><topic>Ovariectomy</topic><topic>Ovary - pathology</topic><topic>Ovary - surgery</topic><topic>Registries</topic><topic>Testicular Neoplasms - pathology</topic><topic>Testicular Neoplasms - prevention & control</topic><topic>Testis - pathology</topic><topic>Testis - surgery</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Tack, Lloyd J.W.</creatorcontrib><creatorcontrib>Maris, Ellen</creatorcontrib><creatorcontrib>Looijenga, Leendert H.J.</creatorcontrib><creatorcontrib>Hannema, Sabine E.</creatorcontrib><creatorcontrib>Audi, Laura</creatorcontrib><creatorcontrib>Köhler, Birgit</creatorcontrib><creatorcontrib>Holterhus, Paul-Martin</creatorcontrib><creatorcontrib>Riedl, Stefan</creatorcontrib><creatorcontrib>Wisniewski, Amy </creatorcontrib><creatorcontrib>Flück, Christa E.</creatorcontrib><creatorcontrib>Davies, Justin H.</creatorcontrib><creatorcontrib>T'Sjoen, Guy</creatorcontrib><creatorcontrib>Lucas-Herald , Angela K.</creatorcontrib><creatorcontrib>Evliyaoglu, Olcay</creatorcontrib><creatorcontrib>Krone, Nils</creatorcontrib><creatorcontrib>Iotova, Violeta</creatorcontrib><creatorcontrib>Marginean, Otilia</creatorcontrib><creatorcontrib>Balsamo, Antonio</creatorcontrib><creatorcontrib>Verkauskas, Gilvydas</creatorcontrib><creatorcontrib>Weintrob, Naomi</creatorcontrib><creatorcontrib>Ellaithi, Mona</creatorcontrib><creatorcontrib>Nordenström, Anna</creatorcontrib><creatorcontrib>Verrijn Stuart , Annemarie</creatorcontrib><creatorcontrib>Kluivers, Kirsten B.</creatorcontrib><creatorcontrib>Wolffenbuttel, Katja P.</creatorcontrib><creatorcontrib>Ahmed, S. Faisal</creatorcontrib><creatorcontrib>Cools, Martine</creatorcontrib><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><collection>SwePub</collection><collection>SwePub Articles</collection><collection>SWEPUB Freely available online</collection><collection>SwePub Articles full text</collection><jtitle>Hormone research in paediatrics</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Tack, Lloyd J.W.</au><au>Maris, Ellen</au><au>Looijenga, Leendert H.J.</au><au>Hannema, Sabine E.</au><au>Audi, Laura</au><au>Köhler, Birgit</au><au>Holterhus, Paul-Martin</au><au>Riedl, Stefan</au><au>Wisniewski, Amy </au><au>Flück, Christa E.</au><au>Davies, Justin H.</au><au>T'Sjoen, Guy</au><au>Lucas-Herald , Angela K.</au><au>Evliyaoglu, Olcay</au><au>Krone, Nils</au><au>Iotova, Violeta</au><au>Marginean, Otilia</au><au>Balsamo, Antonio</au><au>Verkauskas, Gilvydas</au><au>Weintrob, Naomi</au><au>Ellaithi, Mona</au><au>Nordenström, Anna</au><au>Verrijn Stuart , Annemarie</au><au>Kluivers, Kirsten B.</au><au>Wolffenbuttel, Katja P.</au><au>Ahmed, S. Faisal</au><au>Cools, Martine</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Management of Gonads in Adults with Androgen Insensitivity: An International Survey</atitle><jtitle>Hormone research in paediatrics</jtitle><addtitle>Horm Res Paediatr</addtitle><date>2018-01-01</date><risdate>2018</risdate><volume>90</volume><issue>4</issue><spage>236</spage><epage>246</epage><pages>236-246</pages><issn>1663-2818</issn><eissn>1663-2826</eissn><abstract>Background: Complete and partial androgen insensitivity syndrome (CAIS, PAIS) are associated with an increased risk of gonadal germ cell cancer (GGCC). Recent guidelines recommend gonadectomy in women with CAIS in late adolescence. Nevertheless, many adult women prefer to retain their gonads. Aims: This study aims to explore attitudes towards gonadectomy in AIS in centres around the world, estimate the proportion of adults with retained gonads and/or who developed GGCC, and explore reasons for declining gonadectomy. Methods: A survey was performed among health care professionals who use the International DSD Registry (I-DSD). Results: Data were provided from 22 centres in 16 countries on 166 women (CAIS) and 26 men (PAIS). In CAIS, gonadectomy was recommended in early adulthood in 67% of centres; 19/166 (11.4%) women refused gonadectomy. Among 142 women who had gonadectomy, evidence of germ cell neoplasm in situ (GCNIS), the precursor of GGCC, was reported in 2 (1.4%) out of 8 from whom pathology results were formally provided. Nine out of 26 men with PAIS (34.6%) had retained gonads; 11% of centres recommended routine gonadectomy in PAIS. Conclusion: Although development of GGCC seems rare, gonadectomy after puberty is broadly recommended in CAIS; in PAIS this is more variable. Overall, our data reflect the need for evidence-based guidelines regarding prophylactic gonadectomy in AIS.</abstract><cop>Basel, Switzerland</cop><pmid>30336477</pmid><doi>10.1159/000493645</doi><tpages>11</tpages><orcidid>https://orcid.org/0000-0003-0405-3401</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Hormone research in paediatrics, 2018-01, Vol.90 (4), p.236-246 |
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| source | Karger Journals; MEDLINE; Alma/SFX Local Collection; SWEPUB Freely available online |
| subjects | Adolescent Adult Androgen-Insensitivity Syndrome - pathology Androgen-Insensitivity Syndrome - surgery Female Humans Male Neoplasms, Germ Cell and Embryonal - pathology Neoplasms, Germ Cell and Embryonal - prevention & control Orchiectomy Original Paper Ovarian Neoplasms - pathology Ovarian Neoplasms - prevention & control Ovariectomy Ovary - pathology Ovary - surgery Registries Testicular Neoplasms - pathology Testicular Neoplasms - prevention & control Testis - pathology Testis - surgery |
| title | Management of Gonads in Adults with Androgen Insensitivity: An International Survey |
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