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What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease
Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implem...
Autores principales: | , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9651581/ https://www.ncbi.nlm.nih.gov/pubmed/36367870 http://dx.doi.org/10.1371/journal.pone.0272204 |
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author | Lamont, Andrea E. Hsu, Lewis L. Jacobs, Sara Gibson, Robert Treadwell, Marsha Chen, Yumei Lottenberg, Richard Axelrod, Kathleen Varughese, Taniya Melvin, Cathy Smith, Sharon Chukwudozie, Ifeanyi Beverly Kanter, Julie |
author_facet | Lamont, Andrea E. Hsu, Lewis L. Jacobs, Sara Gibson, Robert Treadwell, Marsha Chen, Yumei Lottenberg, Richard Axelrod, Kathleen Varughese, Taniya Melvin, Cathy Smith, Sharon Chukwudozie, Ifeanyi Beverly Kanter, Julie |
author_sort | Lamont, Andrea E. |
collection | PubMed |
description | Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a “SCD expert provider”. In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an “unaffiliated patient” with SCD and to define an “SCD specialist,” as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is “someone who has not been seen by a sickle cell specialist in at least a year.” A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having “knowledge” means: being knowledgeable of the 2014 NIH Guidelines, “Evidence-Based Management of SCD”, trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years.” The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care. |
format | Online Article Text |
id | pubmed-9651581 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
spelling | pubmed-96515812022-11-15 What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease Lamont, Andrea E. Hsu, Lewis L. Jacobs, Sara Gibson, Robert Treadwell, Marsha Chen, Yumei Lottenberg, Richard Axelrod, Kathleen Varughese, Taniya Melvin, Cathy Smith, Sharon Chukwudozie, Ifeanyi Beverly Kanter, Julie PLoS One Research Article Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a “SCD expert provider”. In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an “unaffiliated patient” with SCD and to define an “SCD specialist,” as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is “someone who has not been seen by a sickle cell specialist in at least a year.” A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having “knowledge” means: being knowledgeable of the 2014 NIH Guidelines, “Evidence-Based Management of SCD”, trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years.” The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care. Public Library of Science 2022-11-11 /pmc/articles/PMC9651581/ /pubmed/36367870 http://dx.doi.org/10.1371/journal.pone.0272204 Text en https://creativecommons.org/publicdomain/zero/1.0/This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 (https://creativecommons.org/publicdomain/zero/1.0/) public domain dedication. |
spellingShingle | Research Article Lamont, Andrea E. Hsu, Lewis L. Jacobs, Sara Gibson, Robert Treadwell, Marsha Chen, Yumei Lottenberg, Richard Axelrod, Kathleen Varughese, Taniya Melvin, Cathy Smith, Sharon Chukwudozie, Ifeanyi Beverly Kanter, Julie What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease |
title | What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease |
title_full | What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease |
title_fullStr | What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease |
title_full_unstemmed | What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease |
title_short | What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease |
title_sort | what does it mean to be affiliated with care?: delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9651581/ https://www.ncbi.nlm.nih.gov/pubmed/36367870 http://dx.doi.org/10.1371/journal.pone.0272204 |
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