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How Do Patients With Cirrhosis and Their Caregivers Learn About and Manage Their Health? A Review and Qualitative Study

The complexity of cirrhosis requires patients and their caregivers to be well educated to improve outcomes. Data are lacking regarding how to best educate patients and their caregivers in the setting of cirrhosis. Our aim is to understand (both through existing literature and by asking patients and...

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Autores principales: Saleh, Zachary M., Bloom, Patricia P., Grzyb, Katie, Tapper, Elliot B.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7850304/
https://www.ncbi.nlm.nih.gov/pubmed/33553967
http://dx.doi.org/10.1002/hep4.1621
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author Saleh, Zachary M.
Bloom, Patricia P.
Grzyb, Katie
Tapper, Elliot B.
author_facet Saleh, Zachary M.
Bloom, Patricia P.
Grzyb, Katie
Tapper, Elliot B.
author_sort Saleh, Zachary M.
collection PubMed
description The complexity of cirrhosis requires patients and their caregivers to be well educated to improve outcomes. Data are lacking regarding how to best educate patients and their caregivers in the setting of cirrhosis. Our aim is to understand (both through existing literature and by asking patients and their caregivers) how patients learn about their disease, barriers in their education and disease management, and self‐management strategies. We performed a structured search of published articles in PubMed (1973 to 2020) using keywords “cirrhosis” plus “barriers”, “education”, “self‐management”, or “self‐care”. Additionally, we conducted a focus group of a representative sample of patients and their caregivers to understand how knowledge about cirrhosis is found and incorporated into self‐management. Of 504 returned manuscripts, 11 pertained to barriers in cirrhosis, interventions, or educational management. Barriers are well documented and include disease complexity, medication challenges, comorbid conditions, and lack of effective education. However, data regarding addressing these barriers, especially effective educational interventions, are scarce. Current strategies include booklets and videos, patient empowerment, and in‐person lectures. Without widespread use of these interventions, patients are left with suboptimal knowledge about their disease, a sentiment unanimously echoed by our focus group. Despite linkage to subspecialty care and consistent follow‐up, patients remain uncertain about their disease origin, prognosis, and therapies to manage symptoms. It is clear that more data are needed to assess effective strategies to address unmet educational needs. Existing strategies need to be blended and improved, their effectiveness evaluated, and the results distributed widely.
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spelling pubmed-78503042021-02-05 How Do Patients With Cirrhosis and Their Caregivers Learn About and Manage Their Health? A Review and Qualitative Study Saleh, Zachary M. Bloom, Patricia P. Grzyb, Katie Tapper, Elliot B. Hepatol Commun Reviews The complexity of cirrhosis requires patients and their caregivers to be well educated to improve outcomes. Data are lacking regarding how to best educate patients and their caregivers in the setting of cirrhosis. Our aim is to understand (both through existing literature and by asking patients and their caregivers) how patients learn about their disease, barriers in their education and disease management, and self‐management strategies. We performed a structured search of published articles in PubMed (1973 to 2020) using keywords “cirrhosis” plus “barriers”, “education”, “self‐management”, or “self‐care”. Additionally, we conducted a focus group of a representative sample of patients and their caregivers to understand how knowledge about cirrhosis is found and incorporated into self‐management. Of 504 returned manuscripts, 11 pertained to barriers in cirrhosis, interventions, or educational management. Barriers are well documented and include disease complexity, medication challenges, comorbid conditions, and lack of effective education. However, data regarding addressing these barriers, especially effective educational interventions, are scarce. Current strategies include booklets and videos, patient empowerment, and in‐person lectures. Without widespread use of these interventions, patients are left with suboptimal knowledge about their disease, a sentiment unanimously echoed by our focus group. Despite linkage to subspecialty care and consistent follow‐up, patients remain uncertain about their disease origin, prognosis, and therapies to manage symptoms. It is clear that more data are needed to assess effective strategies to address unmet educational needs. Existing strategies need to be blended and improved, their effectiveness evaluated, and the results distributed widely. John Wiley and Sons Inc. 2020-11-17 /pmc/articles/PMC7850304/ /pubmed/33553967 http://dx.doi.org/10.1002/hep4.1621 Text en © 2020 The Authors. Hepatology Communications published by Wiley Periodicals LLC on behalf of the American Association for the Study of Liver Diseases. This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Reviews
Saleh, Zachary M.
Bloom, Patricia P.
Grzyb, Katie
Tapper, Elliot B.
How Do Patients With Cirrhosis and Their Caregivers Learn About and Manage Their Health? A Review and Qualitative Study
title How Do Patients With Cirrhosis and Their Caregivers Learn About and Manage Their Health? A Review and Qualitative Study
title_full How Do Patients With Cirrhosis and Their Caregivers Learn About and Manage Their Health? A Review and Qualitative Study
title_fullStr How Do Patients With Cirrhosis and Their Caregivers Learn About and Manage Their Health? A Review and Qualitative Study
title_full_unstemmed How Do Patients With Cirrhosis and Their Caregivers Learn About and Manage Their Health? A Review and Qualitative Study
title_short How Do Patients With Cirrhosis and Their Caregivers Learn About and Manage Their Health? A Review and Qualitative Study
title_sort how do patients with cirrhosis and their caregivers learn about and manage their health? a review and qualitative study
topic Reviews
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7850304/
https://www.ncbi.nlm.nih.gov/pubmed/33553967
http://dx.doi.org/10.1002/hep4.1621
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