Cargando…

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...

Descripción completa

Detalles Bibliográficos
Autores principales: Kavalieratos, Dio, Georgiopoulos, Anna M., Dhingra, Lara, Basile, Melissa J., Rabinowitz, Elliot, Hempstead, Sarah E., Faro, Albert, Dellon, Elisabeth P.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Mary Ann Liebert, Inc., publishers 2021
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
_version_ 1783626787821977600
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
work_keys_str_mv AT kavalieratosdio modelsofpalliativecaredeliveryforindividualswithcysticfibrosiscysticfibrosisfoundationevidenceinformedconsensusguidelines
AT georgiopoulosannam modelsofpalliativecaredeliveryforindividualswithcysticfibrosiscysticfibrosisfoundationevidenceinformedconsensusguidelines
AT dhingralara modelsofpalliativecaredeliveryforindividualswithcysticfibrosiscysticfibrosisfoundationevidenceinformedconsensusguidelines
AT basilemelissaj modelsofpalliativecaredeliveryforindividualswithcysticfibrosiscysticfibrosisfoundationevidenceinformedconsensusguidelines
AT rabinowitzelliot modelsofpalliativecaredeliveryforindividualswithcysticfibrosiscysticfibrosisfoundationevidenceinformedconsensusguidelines
AT hempsteadsarahe modelsofpalliativecaredeliveryforindividualswithcysticfibrosiscysticfibrosisfoundationevidenceinformedconsensusguidelines
AT faroalbert modelsofpalliativecaredeliveryforindividualswithcysticfibrosiscysticfibrosisfoundationevidenceinformedconsensusguidelines
AT dellonelisabethp modelsofpalliativecaredeliveryforindividualswithcysticfibrosiscysticfibrosisfoundationevidenceinformedconsensusguidelines