Knowledge gaps in reproductive and sexual health in girls and women with sickle cell disease
Summary There is an immediate need to address long‐standing questions about the reproductive health of girls and women with sickle cell disease (SCD). There are many SCD‐related reproductive risks and uncertainties across girls’ and women’s reproductive life span, with particularly outstanding conce...
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| Veröffentlicht in: | British journal of haematology 2021-09, Vol.194 (6), p.970-979 |
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| container_title | British journal of haematology |
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| creator | Pecker, Lydia H. Sharma, Deva Nero, Alecia Paidas, Michael J. Ware, Russell E. James, Andra H. Smith‐Whitley, Kim |
| description | Summary
There is an immediate need to address long‐standing questions about the reproductive health of girls and women with sickle cell disease (SCD). There are many SCD‐related reproductive risks and uncertainties across girls’ and women’s reproductive life span, with particularly outstanding concerns about menstruation, contraception, fertility and pregnancy. Extant literature addressing women’s reproductive health topics is mostly descriptive; there are few high‐quality interventional studies. In 2020, the Centers for Disease Control and Prevention and the Foundation for Women and Girls with Blood Disorders convened an expert panel to assess the knowledge gaps in women’s reproductive health in SCD. The panel identified significant limitations to clinical care due to the need for research. The panel also identified prominent barriers to research and care. In this report, we frame these issues, providing a roadmap for investigators, funding agencies, and policy makers to advance care for girls and women with SCD. |
| doi_str_mv | 10.1111/bjh.17658 |
| format | Article |
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There is an immediate need to address long‐standing questions about the reproductive health of girls and women with sickle cell disease (SCD). There are many SCD‐related reproductive risks and uncertainties across girls’ and women’s reproductive life span, with particularly outstanding concerns about menstruation, contraception, fertility and pregnancy. Extant literature addressing women’s reproductive health topics is mostly descriptive; there are few high‐quality interventional studies. In 2020, the Centers for Disease Control and Prevention and the Foundation for Women and Girls with Blood Disorders convened an expert panel to assess the knowledge gaps in women’s reproductive health in SCD. The panel identified significant limitations to clinical care due to the need for research. The panel also identified prominent barriers to research and care. In this report, we frame these issues, providing a roadmap for investigators, funding agencies, and policy makers to advance care for girls and women with SCD.</description><identifier>ISSN: 0007-1048</identifier><identifier>EISSN: 1365-2141</identifier><identifier>DOI: 10.1111/bjh.17658</identifier><identifier>PMID: 34231198</identifier><language>eng</language><publisher>England: Blackwell Publishing Ltd</publisher><subject>Anemia, Sickle Cell - epidemiology ; Anemia, Sickle Cell - physiopathology ; Contraception ; Female ; Fertility ; health disparities ; Health Knowledge, Attitudes, Practice ; Hematological diseases ; Hematology ; Humans ; Life span ; Menstruation ; Reproductive Health ; Sexual Health ; Sickle cell anemia ; Sickle cell disease ; Women's Health ; Womens health</subject><ispartof>British journal of haematology, 2021-09, Vol.194 (6), p.970-979</ispartof><rights>2021 The Authors. British Journal of Haematology published by British Society for Haematology and John Wiley & Sons Ltd.</rights><rights>2021. This article is published under http://creativecommons.org/licenses/by-nc-nd/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4438-a4abbb6e3c72617c557fbd673c8da84176936d1c88ca8cc426eeba47e960500f3</citedby><cites>FETCH-LOGICAL-c4438-a4abbb6e3c72617c557fbd673c8da84176936d1c88ca8cc426eeba47e960500f3</cites><orcidid>0000-0002-8371-9752 ; 0000-0002-6437-5296</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fbjh.17658$$EPDF$$P50$$Gwiley$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fbjh.17658$$EHTML$$P50$$Gwiley$$Hfree_for_read</linktohtml><link.rule.ids>230,314,780,784,885,1417,1433,27924,27925,45574,45575,46409,46833</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/34231198$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Pecker, Lydia H.</creatorcontrib><creatorcontrib>Sharma, Deva</creatorcontrib><creatorcontrib>Nero, Alecia</creatorcontrib><creatorcontrib>Paidas, Michael J.</creatorcontrib><creatorcontrib>Ware, Russell E.</creatorcontrib><creatorcontrib>James, Andra H.</creatorcontrib><creatorcontrib>Smith‐Whitley, Kim</creatorcontrib><title>Knowledge gaps in reproductive and sexual health in girls and women with sickle cell disease</title><title>British journal of haematology</title><addtitle>Br J Haematol</addtitle><description>Summary
There is an immediate need to address long‐standing questions about the reproductive health of girls and women with sickle cell disease (SCD). There are many SCD‐related reproductive risks and uncertainties across girls’ and women’s reproductive life span, with particularly outstanding concerns about menstruation, contraception, fertility and pregnancy. Extant literature addressing women’s reproductive health topics is mostly descriptive; there are few high‐quality interventional studies. In 2020, the Centers for Disease Control and Prevention and the Foundation for Women and Girls with Blood Disorders convened an expert panel to assess the knowledge gaps in women’s reproductive health in SCD. The panel identified significant limitations to clinical care due to the need for research. The panel also identified prominent barriers to research and care. In this report, we frame these issues, providing a roadmap for investigators, funding agencies, and policy makers to advance care for girls and women with SCD.</description><subject>Anemia, Sickle Cell - epidemiology</subject><subject>Anemia, Sickle Cell - physiopathology</subject><subject>Contraception</subject><subject>Female</subject><subject>Fertility</subject><subject>health disparities</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Hematological diseases</subject><subject>Hematology</subject><subject>Humans</subject><subject>Life span</subject><subject>Menstruation</subject><subject>Reproductive Health</subject><subject>Sexual Health</subject><subject>Sickle cell anemia</subject><subject>Sickle cell disease</subject><subject>Women's Health</subject><subject>Womens health</subject><issn>0007-1048</issn><issn>1365-2141</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>WIN</sourceid><sourceid>EIF</sourceid><recordid>eNp1kc1OGzEURi1UBIGy4AUqS93AYhJ77LE9m0oFtYQfqZt2h2R5PDeJU2ec2hnSvH0dAogi4c2VfI-O7qcPoVNKhjS_UTOfDakUldpDA8pEVZSU0w9oQAiRBSVcHaKjlOaEUEYqeoAOGS8ZpbUaoPvbLqw9tFPAU7NM2HU4wjKGtrcr9wDYdC1O8Lc3Hs_A-NVsS0xd9OlxtQ4L6PDa5f_k7G8P2IL3uHUJTIKPaH9ifIKTp3mMfn3_9vNyXNz9uLq-_HpXWM6ZKgw3TdMIYFaWgkpbVXLStEIyq1qjeE5WM9FSq5Q1ylpeCoDGcAm1IBUhE3aMvuy8y75ZQGuhW0Xj9TK6hYkbHYzT_286N9PT8KAV56qmLAvOngQx_OkhrfTCpW0S00Hoky4rXpeEi7rO6Oc36Dz0scvxMiXLupJKkEyd7ygbQ0oRJi_HUKK3nencmX7sLLOfXl__Qj6XlIHRDlg7D5v3TfriZrxT_gP5w6GD</recordid><startdate>202109</startdate><enddate>202109</enddate><creator>Pecker, Lydia H.</creator><creator>Sharma, Deva</creator><creator>Nero, Alecia</creator><creator>Paidas, Michael J.</creator><creator>Ware, Russell E.</creator><creator>James, Andra H.</creator><creator>Smith‐Whitley, Kim</creator><general>Blackwell Publishing Ltd</general><scope>24P</scope><scope>WIN</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>7T5</scope><scope>H94</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-8371-9752</orcidid><orcidid>https://orcid.org/0000-0002-6437-5296</orcidid></search><sort><creationdate>202109</creationdate><title>Knowledge gaps in reproductive and sexual health in girls and women with sickle cell disease</title><author>Pecker, Lydia H. ; Sharma, Deva ; Nero, Alecia ; Paidas, Michael J. ; Ware, Russell E. ; James, Andra H. ; Smith‐Whitley, Kim</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4438-a4abbb6e3c72617c557fbd673c8da84176936d1c88ca8cc426eeba47e960500f3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>Anemia, Sickle Cell - epidemiology</topic><topic>Anemia, Sickle Cell - physiopathology</topic><topic>Contraception</topic><topic>Female</topic><topic>Fertility</topic><topic>health disparities</topic><topic>Health Knowledge, Attitudes, Practice</topic><topic>Hematological diseases</topic><topic>Hematology</topic><topic>Humans</topic><topic>Life span</topic><topic>Menstruation</topic><topic>Reproductive Health</topic><topic>Sexual Health</topic><topic>Sickle cell anemia</topic><topic>Sickle cell disease</topic><topic>Women's Health</topic><topic>Womens health</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Pecker, Lydia H.</creatorcontrib><creatorcontrib>Sharma, Deva</creatorcontrib><creatorcontrib>Nero, Alecia</creatorcontrib><creatorcontrib>Paidas, Michael J.</creatorcontrib><creatorcontrib>Ware, Russell E.</creatorcontrib><creatorcontrib>James, Andra H.</creatorcontrib><creatorcontrib>Smith‐Whitley, Kim</creatorcontrib><collection>Wiley Online Library (Open Access Collection)</collection><collection>Wiley Online Library (Open Access Collection)</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Immunology Abstracts</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>British journal of haematology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Pecker, Lydia H.</au><au>Sharma, Deva</au><au>Nero, Alecia</au><au>Paidas, Michael J.</au><au>Ware, Russell E.</au><au>James, Andra H.</au><au>Smith‐Whitley, Kim</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Knowledge gaps in reproductive and sexual health in girls and women with sickle cell disease</atitle><jtitle>British journal of haematology</jtitle><addtitle>Br J Haematol</addtitle><date>2021-09</date><risdate>2021</risdate><volume>194</volume><issue>6</issue><spage>970</spage><epage>979</epage><pages>970-979</pages><issn>0007-1048</issn><eissn>1365-2141</eissn><abstract>Summary
There is an immediate need to address long‐standing questions about the reproductive health of girls and women with sickle cell disease (SCD). There are many SCD‐related reproductive risks and uncertainties across girls’ and women’s reproductive life span, with particularly outstanding concerns about menstruation, contraception, fertility and pregnancy. Extant literature addressing women’s reproductive health topics is mostly descriptive; there are few high‐quality interventional studies. In 2020, the Centers for Disease Control and Prevention and the Foundation for Women and Girls with Blood Disorders convened an expert panel to assess the knowledge gaps in women’s reproductive health in SCD. The panel identified significant limitations to clinical care due to the need for research. The panel also identified prominent barriers to research and care. In this report, we frame these issues, providing a roadmap for investigators, funding agencies, and policy makers to advance care for girls and women with SCD.</abstract><cop>England</cop><pub>Blackwell Publishing Ltd</pub><pmid>34231198</pmid><doi>10.1111/bjh.17658</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0002-8371-9752</orcidid><orcidid>https://orcid.org/0000-0002-6437-5296</orcidid><oa>free_for_read</oa></addata></record> |
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| source | Wiley Online Library - AutoHoldings Journals; MEDLINE; Wiley Online Library (Open Access Collection) |
| subjects | Anemia, Sickle Cell - epidemiology Anemia, Sickle Cell - physiopathology Contraception Female Fertility health disparities Health Knowledge, Attitudes, Practice Hematological diseases Hematology Humans Life span Menstruation Reproductive Health Sexual Health Sickle cell anemia Sickle cell disease Women's Health Womens health |
| title | Knowledge gaps in reproductive and sexual health in girls and women with sickle cell disease |
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