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How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers
OBJECTIVE: This study aimed to describe the characteristics of pediatric neurologists (PNs) in Latin America (LA) who attend to children and adolescents with epilepsy and convey to them the risk of sudden unexpected death in epilepsy (SUDEP). METHODS: Personal data and details of discussion of SUDEP...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9436282/ https://www.ncbi.nlm.nih.gov/pubmed/35726385 http://dx.doi.org/10.1002/epi4.12620 |
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author | Venegas, Viviana Manterola, Carla De Pablo, Jose Garcia, Mariano de León, Sonia Ponce Cavada, Gabriel |
author_facet | Venegas, Viviana Manterola, Carla De Pablo, Jose Garcia, Mariano de León, Sonia Ponce Cavada, Gabriel |
author_sort | Venegas, Viviana |
collection | PubMed |
description | OBJECTIVE: This study aimed to describe the characteristics of pediatric neurologists (PNs) in Latin America (LA) who attend to children and adolescents with epilepsy and convey to them the risk of sudden unexpected death in epilepsy (SUDEP). METHODS: Personal data and details of discussion of SUDEP with families, including relevance of SUDEP disclosure, frequency of such communication, perceived benefits and risks of disclosure, extent of training received on such disclosure, and professional experience with SUDEP, were collected through an online survey of PNs from LA. Their personal experience in carrying out this conversation was obtained through responses to an open question, further used to identify the main barriers. RESULTS: Of the 442 surveys received, 367 (83%) were analyzed. Most participants (73.8%) responded that the communication of SUDEP risk was relevant or very relevant; however, only 17.9% reported communicating it always or very frequently. Factors that increased the frequency of SUDEP communication included patients with higher levels of complexity (OR = 2.18, P = .003) and the physician's personal experience with SUDEP (OR = 2.305, P < .001). Direct questions from the family and avoiding scaring them about a rare outcome were the main motivations behind discussing and not discussing SUDEP, respectively. In the open question, respondents identified worries about the patient's ability to understand the information and cultural gaps as barriers. “Informing with the intention of improving adherence to treatment” and “establishing an empathic relationship” were significantly related. Further, the concept of “do not scare” was significantly related to “personal difficulties in discussing SUDEP.” SIGNIFICANCE: Although most PNs agree that communication about SUDEP is relevant, only a minority actually engages in it. Participants identified a lack of appropriate training in such communication as a barrier. A better understanding of communication expectations, education of health professionals, and communication techniques have a strong relevance in diminishing the gap between guidelines and practice. |
format | Online Article Text |
id | pubmed-9436282 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-94362822022-09-09 How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers Venegas, Viviana Manterola, Carla De Pablo, Jose Garcia, Mariano de León, Sonia Ponce Cavada, Gabriel Epilepsia Open Original Articles OBJECTIVE: This study aimed to describe the characteristics of pediatric neurologists (PNs) in Latin America (LA) who attend to children and adolescents with epilepsy and convey to them the risk of sudden unexpected death in epilepsy (SUDEP). METHODS: Personal data and details of discussion of SUDEP with families, including relevance of SUDEP disclosure, frequency of such communication, perceived benefits and risks of disclosure, extent of training received on such disclosure, and professional experience with SUDEP, were collected through an online survey of PNs from LA. Their personal experience in carrying out this conversation was obtained through responses to an open question, further used to identify the main barriers. RESULTS: Of the 442 surveys received, 367 (83%) were analyzed. Most participants (73.8%) responded that the communication of SUDEP risk was relevant or very relevant; however, only 17.9% reported communicating it always or very frequently. Factors that increased the frequency of SUDEP communication included patients with higher levels of complexity (OR = 2.18, P = .003) and the physician's personal experience with SUDEP (OR = 2.305, P < .001). Direct questions from the family and avoiding scaring them about a rare outcome were the main motivations behind discussing and not discussing SUDEP, respectively. In the open question, respondents identified worries about the patient's ability to understand the information and cultural gaps as barriers. “Informing with the intention of improving adherence to treatment” and “establishing an empathic relationship” were significantly related. Further, the concept of “do not scare” was significantly related to “personal difficulties in discussing SUDEP.” SIGNIFICANCE: Although most PNs agree that communication about SUDEP is relevant, only a minority actually engages in it. Participants identified a lack of appropriate training in such communication as a barrier. A better understanding of communication expectations, education of health professionals, and communication techniques have a strong relevance in diminishing the gap between guidelines and practice. John Wiley and Sons Inc. 2022-07-08 /pmc/articles/PMC9436282/ /pubmed/35726385 http://dx.doi.org/10.1002/epi4.12620 Text en © 2022 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://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 | Original Articles Venegas, Viviana Manterola, Carla De Pablo, Jose Garcia, Mariano de León, Sonia Ponce Cavada, Gabriel How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers |
title | How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers |
title_full | How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers |
title_fullStr | How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers |
title_full_unstemmed | How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers |
title_short | How the characteristics of pediatric neurologists in Latin America influence the communication of sudden unexpected death in epilepsy to patients and caregivers |
title_sort | how the characteristics of pediatric neurologists in latin america influence the communication of sudden unexpected death in epilepsy to patients and caregivers |
topic | Original Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9436282/ https://www.ncbi.nlm.nih.gov/pubmed/35726385 http://dx.doi.org/10.1002/epi4.12620 |
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