Management of Hypoplastic Left Heart Syndrome in Low-Resource Settings and the Ethics of Decision-Making

Hypoplastic left heart syndrome (HLHS) is possibly the most challenging congenital heart defect to confront in any setting. The highly specialized infrastructure and resources needed to treat HLHS is not available in many low-resource settings. However, low-resource settings must not be assumed to b...

Ausführliche Beschreibung

Gespeichert in:
Bibliographische Detailangaben
Veröffentlicht in:World journal for pediatric & congenital heart surgery 2022-09, Vol.13 (5), p.609-614
Hauptverfasser: Edwin, Frank, Edwin, Ama K., Palacios-Macedo, Alexis, Mamorare, Hendrick, Yao, Nana Akyaa
Format: Artikel
Sprache:eng
Online-Zugang:Volltext
Tags: Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
container_end_page 614
container_issue 5
container_start_page 609
container_title World journal for pediatric & congenital heart surgery
container_volume 13
creator Edwin, Frank
Edwin, Ama K.
Palacios-Macedo, Alexis
Mamorare, Hendrick
Yao, Nana Akyaa
description Hypoplastic left heart syndrome (HLHS) is possibly the most challenging congenital heart defect to confront in any setting. The highly specialized infrastructure and resources needed to treat HLHS is not available in many low-resource settings. However, low-resource settings must not be assumed to be synonymous with low- and middle-income countries as national income is not necessarily indicative of a country’s prioritization of healthcare resources. Besides, a low-resource setting may be institution-specific as well as country-specific. We have stratified institutional capabilities for addressing the requirements of treatment for HLHS into five levels based on the capacity for diagnosis, intervention, and post-discharge monitoring. Depending on institutional capabilities, children born with HLHS in low-resource settings experience a spectrum of outcomes ranging from death without diagnosis to the hybrid or Norwood stage 1 palliation. The decision-making is ethically challenging when resources are scarce and economic efficiency must be considered in the context of distributive justice. Even in settings that would be classified as resource-rich where survival after surgery and quality of life afterward keep improving, not every parent would choose surgical intervention for their hypothetical child with HLHS.
doi_str_mv 10.1177/21501351221103511
format Article
fullrecord <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_2709742269</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sage_id>10.1177_21501351221103511</sage_id><sourcerecordid>2709742269</sourcerecordid><originalsourceid>FETCH-LOGICAL-c199t-b420b4217cfd29a0dcb3fb07dd4497c1eeb15e5e116193c45879bf752c16ed523</originalsourceid><addsrcrecordid>eNp9kE9LAzEQxYMoWLQfwFuOXrZmsn9ijlKrFbYIVsHbks3OtqnbZN2kSL-9KRUvggPDDMN7D-ZHyBWwCYAQNxxyBmkOnAOwOOGEjA63BNLi_fR3z-GcjL3fsFhZkaZZNiLrhbJqhVu0gbqWzve96zvlg9G0xDbQOaoh0OXeNoPbIjWWlu4reUHvdoNGusQQjF15qmxDwxrpLKyN9oeoe9TGG2eThfqIkkty1qrO4_hnXpC3h9nrdJ6Uz49P07sy0SBlSOqMs9ggdNtwqVij67StmWiaLJNCA2INOeYIUIBMdZbfClm3IucaCmxynl6Q62NuP7jPHfpQbY3X2HXKotv5igsmRcZ5IaMUjlI9OO8HbKt-MFs17Ctg1QFs9Qds9EyOHh-pVZtIwcZv_jF8Aztod6A</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2709742269</pqid></control><display><type>article</type><title>Management of Hypoplastic Left Heart Syndrome in Low-Resource Settings and the Ethics of Decision-Making</title><source>SAGE Journals Online</source><creator>Edwin, Frank ; Edwin, Ama K. ; Palacios-Macedo, Alexis ; Mamorare, Hendrick ; Yao, Nana Akyaa</creator><creatorcontrib>Edwin, Frank ; Edwin, Ama K. ; Palacios-Macedo, Alexis ; Mamorare, Hendrick ; Yao, Nana Akyaa</creatorcontrib><description>Hypoplastic left heart syndrome (HLHS) is possibly the most challenging congenital heart defect to confront in any setting. The highly specialized infrastructure and resources needed to treat HLHS is not available in many low-resource settings. However, low-resource settings must not be assumed to be synonymous with low- and middle-income countries as national income is not necessarily indicative of a country’s prioritization of healthcare resources. Besides, a low-resource setting may be institution-specific as well as country-specific. We have stratified institutional capabilities for addressing the requirements of treatment for HLHS into five levels based on the capacity for diagnosis, intervention, and post-discharge monitoring. Depending on institutional capabilities, children born with HLHS in low-resource settings experience a spectrum of outcomes ranging from death without diagnosis to the hybrid or Norwood stage 1 palliation. The decision-making is ethically challenging when resources are scarce and economic efficiency must be considered in the context of distributive justice. Even in settings that would be classified as resource-rich where survival after surgery and quality of life afterward keep improving, not every parent would choose surgical intervention for their hypothetical child with HLHS.</description><identifier>ISSN: 2150-1351</identifier><identifier>EISSN: 2150-136X</identifier><identifier>DOI: 10.1177/21501351221103511</identifier><language>eng</language><publisher>Los Angeles, CA: SAGE Publications</publisher><ispartof>World journal for pediatric &amp; congenital heart surgery, 2022-09, Vol.13 (5), p.609-614</ispartof><rights>The Author(s) 2022</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c199t-b420b4217cfd29a0dcb3fb07dd4497c1eeb15e5e116193c45879bf752c16ed523</cites><orcidid>0000-0001-5174-8017</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://journals.sagepub.com/doi/pdf/10.1177/21501351221103511$$EPDF$$P50$$Gsage$$H</linktopdf><linktohtml>$$Uhttps://journals.sagepub.com/doi/10.1177/21501351221103511$$EHTML$$P50$$Gsage$$H</linktohtml><link.rule.ids>314,780,784,21810,27915,27916,43612,43613</link.rule.ids></links><search><creatorcontrib>Edwin, Frank</creatorcontrib><creatorcontrib>Edwin, Ama K.</creatorcontrib><creatorcontrib>Palacios-Macedo, Alexis</creatorcontrib><creatorcontrib>Mamorare, Hendrick</creatorcontrib><creatorcontrib>Yao, Nana Akyaa</creatorcontrib><title>Management of Hypoplastic Left Heart Syndrome in Low-Resource Settings and the Ethics of Decision-Making</title><title>World journal for pediatric &amp; congenital heart surgery</title><addtitle>World Journal for Pediatric and Congenital Heart Surgery</addtitle><description>Hypoplastic left heart syndrome (HLHS) is possibly the most challenging congenital heart defect to confront in any setting. The highly specialized infrastructure and resources needed to treat HLHS is not available in many low-resource settings. However, low-resource settings must not be assumed to be synonymous with low- and middle-income countries as national income is not necessarily indicative of a country’s prioritization of healthcare resources. Besides, a low-resource setting may be institution-specific as well as country-specific. We have stratified institutional capabilities for addressing the requirements of treatment for HLHS into five levels based on the capacity for diagnosis, intervention, and post-discharge monitoring. Depending on institutional capabilities, children born with HLHS in low-resource settings experience a spectrum of outcomes ranging from death without diagnosis to the hybrid or Norwood stage 1 palliation. The decision-making is ethically challenging when resources are scarce and economic efficiency must be considered in the context of distributive justice. Even in settings that would be classified as resource-rich where survival after surgery and quality of life afterward keep improving, not every parent would choose surgical intervention for their hypothetical child with HLHS.</description><issn>2150-1351</issn><issn>2150-136X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><recordid>eNp9kE9LAzEQxYMoWLQfwFuOXrZmsn9ijlKrFbYIVsHbks3OtqnbZN2kSL-9KRUvggPDDMN7D-ZHyBWwCYAQNxxyBmkOnAOwOOGEjA63BNLi_fR3z-GcjL3fsFhZkaZZNiLrhbJqhVu0gbqWzve96zvlg9G0xDbQOaoh0OXeNoPbIjWWlu4reUHvdoNGusQQjF15qmxDwxrpLKyN9oeoe9TGG2eThfqIkkty1qrO4_hnXpC3h9nrdJ6Uz49P07sy0SBlSOqMs9ggdNtwqVij67StmWiaLJNCA2INOeYIUIBMdZbfClm3IucaCmxynl6Q62NuP7jPHfpQbY3X2HXKotv5igsmRcZ5IaMUjlI9OO8HbKt-MFs17Ctg1QFs9Qds9EyOHh-pVZtIwcZv_jF8Aztod6A</recordid><startdate>202209</startdate><enddate>202209</enddate><creator>Edwin, Frank</creator><creator>Edwin, Ama K.</creator><creator>Palacios-Macedo, Alexis</creator><creator>Mamorare, Hendrick</creator><creator>Yao, Nana Akyaa</creator><general>SAGE Publications</general><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0001-5174-8017</orcidid></search><sort><creationdate>202209</creationdate><title>Management of Hypoplastic Left Heart Syndrome in Low-Resource Settings and the Ethics of Decision-Making</title><author>Edwin, Frank ; Edwin, Ama K. ; Palacios-Macedo, Alexis ; Mamorare, Hendrick ; Yao, Nana Akyaa</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c199t-b420b4217cfd29a0dcb3fb07dd4497c1eeb15e5e116193c45879bf752c16ed523</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Edwin, Frank</creatorcontrib><creatorcontrib>Edwin, Ama K.</creatorcontrib><creatorcontrib>Palacios-Macedo, Alexis</creatorcontrib><creatorcontrib>Mamorare, Hendrick</creatorcontrib><creatorcontrib>Yao, Nana Akyaa</creatorcontrib><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>World journal for pediatric &amp; congenital heart surgery</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Edwin, Frank</au><au>Edwin, Ama K.</au><au>Palacios-Macedo, Alexis</au><au>Mamorare, Hendrick</au><au>Yao, Nana Akyaa</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Management of Hypoplastic Left Heart Syndrome in Low-Resource Settings and the Ethics of Decision-Making</atitle><jtitle>World journal for pediatric &amp; congenital heart surgery</jtitle><addtitle>World Journal for Pediatric and Congenital Heart Surgery</addtitle><date>2022-09</date><risdate>2022</risdate><volume>13</volume><issue>5</issue><spage>609</spage><epage>614</epage><pages>609-614</pages><issn>2150-1351</issn><eissn>2150-136X</eissn><abstract>Hypoplastic left heart syndrome (HLHS) is possibly the most challenging congenital heart defect to confront in any setting. The highly specialized infrastructure and resources needed to treat HLHS is not available in many low-resource settings. However, low-resource settings must not be assumed to be synonymous with low- and middle-income countries as national income is not necessarily indicative of a country’s prioritization of healthcare resources. Besides, a low-resource setting may be institution-specific as well as country-specific. We have stratified institutional capabilities for addressing the requirements of treatment for HLHS into five levels based on the capacity for diagnosis, intervention, and post-discharge monitoring. Depending on institutional capabilities, children born with HLHS in low-resource settings experience a spectrum of outcomes ranging from death without diagnosis to the hybrid or Norwood stage 1 palliation. The decision-making is ethically challenging when resources are scarce and economic efficiency must be considered in the context of distributive justice. Even in settings that would be classified as resource-rich where survival after surgery and quality of life afterward keep improving, not every parent would choose surgical intervention for their hypothetical child with HLHS.</abstract><cop>Los Angeles, CA</cop><pub>SAGE Publications</pub><doi>10.1177/21501351221103511</doi><tpages>6</tpages><orcidid>https://orcid.org/0000-0001-5174-8017</orcidid></addata></record>
fulltext fulltext
identifier ISSN: 2150-1351
ispartof World journal for pediatric & congenital heart surgery, 2022-09, Vol.13 (5), p.609-614
issn 2150-1351
2150-136X
language eng
recordid cdi_proquest_miscellaneous_2709742269
source SAGE Journals Online
title Management of Hypoplastic Left Heart Syndrome in Low-Resource Settings and the Ethics of Decision-Making
url https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-14T23%3A52%3A57IST&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=Management%20of%20Hypoplastic%20Left%20Heart%20Syndrome%20in%20Low-Resource%20Settings%20and%20the%20Ethics%20of%20Decision-Making&rft.jtitle=World%20journal%20for%20pediatric%20&%20congenital%20heart%20surgery&rft.au=Edwin,%20Frank&rft.date=2022-09&rft.volume=13&rft.issue=5&rft.spage=609&rft.epage=614&rft.pages=609-614&rft.issn=2150-1351&rft.eissn=2150-136X&rft_id=info:doi/10.1177/21501351221103511&rft_dat=%3Cproquest_cross%3E2709742269%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=2709742269&rft_id=info:pmid/&rft_sage_id=10.1177_21501351221103511&rfr_iscdi=true