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Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines
Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisi...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Mary Ann Liebert, Inc., publishers
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7757696/ https://www.ncbi.nlm.nih.gov/pubmed/32936045 http://dx.doi.org/10.1089/jpm.2020.0311 |
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author | Kavalieratos, Dio Georgiopoulos, Anna M. Dhingra, Lara Basile, Melissa J. Rabinowitz, Elliot Hempstead, Sarah E. Faro, Albert Dellon, Elisabeth P. |
author_facet | Kavalieratos, Dio Georgiopoulos, Anna M. Dhingra, Lara Basile, Melissa J. Rabinowitz, Elliot Hempstead, Sarah E. Faro, Albert Dellon, Elisabeth P. |
author_sort | Kavalieratos, Dio |
collection | PubMed |
description | Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers. |
format | Online Article Text |
id | pubmed-7757696 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Mary Ann Liebert, Inc., publishers |
record_format | MEDLINE/PubMed |
spelling | pubmed-77576962020-12-28 Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines Kavalieratos, Dio Georgiopoulos, Anna M. Dhingra, Lara Basile, Melissa J. Rabinowitz, Elliot Hempstead, Sarah E. Faro, Albert Dellon, Elisabeth P. J Palliat Med Special Report Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers. Mary Ann Liebert, Inc., publishers 2021-01-01 2020-12-17 /pmc/articles/PMC7757696/ /pubmed/32936045 http://dx.doi.org/10.1089/jpm.2020.0311 Text en © Dio Kavalieratos et al., 2021; Published by Mary Ann Liebert, Inc. This Open Access article is distributed under the terms of the Creative Commons License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. |
spellingShingle | Special Report Kavalieratos, Dio Georgiopoulos, Anna M. Dhingra, Lara Basile, Melissa J. Rabinowitz, Elliot Hempstead, Sarah E. Faro, Albert Dellon, Elisabeth P. Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines |
title | Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines |
title_full | Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines |
title_fullStr | Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines |
title_full_unstemmed | Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines |
title_short | Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines |
title_sort | models of palliative care delivery for individuals with cystic fibrosis: cystic fibrosis foundation evidence-informed consensus guidelines |
topic | Special Report |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7757696/ https://www.ncbi.nlm.nih.gov/pubmed/32936045 http://dx.doi.org/10.1089/jpm.2020.0311 |
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