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Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients

Progressive bulbar palsy (PBP) is a form of motoneuron disease and is widely classified as a subtype of amyotrophic lateral sclerosis (ALS) with a shorter time of survival and female predominance. In this retrospective case series of 14 patients with PBP, we focus on challenges in palliative care fo...

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Autores principales: Bublitz, Sarah K., Weck, Christiane, Egger-Rainer, Andrea, Lex, Katharina, Paal, Piret, Lorenzl, Stefan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8497697/
https://www.ncbi.nlm.nih.gov/pubmed/34630279
http://dx.doi.org/10.3389/fneur.2021.700103
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author Bublitz, Sarah K.
Weck, Christiane
Egger-Rainer, Andrea
Lex, Katharina
Paal, Piret
Lorenzl, Stefan
author_facet Bublitz, Sarah K.
Weck, Christiane
Egger-Rainer, Andrea
Lex, Katharina
Paal, Piret
Lorenzl, Stefan
author_sort Bublitz, Sarah K.
collection PubMed
description Progressive bulbar palsy (PBP) is a form of motoneuron disease and is widely classified as a subtype of amyotrophic lateral sclerosis (ALS) with a shorter time of survival and female predominance. In this retrospective case series of 14 patients with PBP, we focus on challenges in palliative care for this patient cohort, including symptom control, gastrostomy, non-invasive ventilation, and end-of-life phase. We show that rapid physical decline at the end of life is associated with bronchopulmonary infection and excessive oral secretion leading to a high level of symptom burden. Early and regular advance care planning discussions with a focus on oral secretion management with patients and caregivers are crucial.
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spelling pubmed-84976972021-10-09 Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients Bublitz, Sarah K. Weck, Christiane Egger-Rainer, Andrea Lex, Katharina Paal, Piret Lorenzl, Stefan Front Neurol Neurology Progressive bulbar palsy (PBP) is a form of motoneuron disease and is widely classified as a subtype of amyotrophic lateral sclerosis (ALS) with a shorter time of survival and female predominance. In this retrospective case series of 14 patients with PBP, we focus on challenges in palliative care for this patient cohort, including symptom control, gastrostomy, non-invasive ventilation, and end-of-life phase. We show that rapid physical decline at the end of life is associated with bronchopulmonary infection and excessive oral secretion leading to a high level of symptom burden. Early and regular advance care planning discussions with a focus on oral secretion management with patients and caregivers are crucial. Frontiers Media S.A. 2021-09-24 /pmc/articles/PMC8497697/ /pubmed/34630279 http://dx.doi.org/10.3389/fneur.2021.700103 Text en Copyright © 2021 Bublitz, Weck, Egger-Rainer, Lex, Paal and Lorenzl. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Neurology
Bublitz, Sarah K.
Weck, Christiane
Egger-Rainer, Andrea
Lex, Katharina
Paal, Piret
Lorenzl, Stefan
Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients
title Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients
title_full Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients
title_fullStr Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients
title_full_unstemmed Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients
title_short Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients
title_sort palliative care challenges of patients with progressive bulbar palsy: a retrospective case series of 14 patients
topic Neurology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8497697/
https://www.ncbi.nlm.nih.gov/pubmed/34630279
http://dx.doi.org/10.3389/fneur.2021.700103
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