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Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy

Social media is one of the most common sources of medical information. We aimed to evaluate the information contained on websites, including social media and descriptions of fundraisers, in terms of the reliability of knowledge about SMA and gene therapy with onasemnogen abeparvovec. We used a set o...

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Autores principales: Tkaczuk, Magdalena, Zakrzewski, Dawid M., Król, Maria, Zawadzka, Marta, Waszak, Przemysław M., Mazurkiewicz-Bełdzińska, Maria
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9777843/
https://www.ncbi.nlm.nih.gov/pubmed/36553969
http://dx.doi.org/10.3390/healthcare10122445
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author Tkaczuk, Magdalena
Zakrzewski, Dawid M.
Król, Maria
Zawadzka, Marta
Waszak, Przemysław M.
Mazurkiewicz-Bełdzińska, Maria
author_facet Tkaczuk, Magdalena
Zakrzewski, Dawid M.
Król, Maria
Zawadzka, Marta
Waszak, Przemysław M.
Mazurkiewicz-Bełdzińska, Maria
author_sort Tkaczuk, Magdalena
collection PubMed
description Social media is one of the most common sources of medical information. We aimed to evaluate the information contained on websites, including social media and descriptions of fundraisers, in terms of the reliability of knowledge about SMA and gene therapy with onasemnogen abeparvovec. We used a set of available online links found using the Newspointtool. Initially, 1525 texts were included in the study, and after applying the inclusion and exclusion criteria, 112 texts were qualified for analysis using the DISCERN scale and the set of questions prepared by the authors. We observed that most of the texts had poor (48.65%) and medium (27.03%) reliability in the final reliability assessment. All the texts selected for the study were related to gene therapy, although few contained key information about it. In addition, the authors of the entries used various words and phrases that influenced the readers’ perceptions of the text. Of the analyzed sources, 68.8% had an emotional component. Social media is a poor source of information about gene therapy for SMA in Poland. The analyzed texts do not provide a full and complete description of the SMA problem. However, it is important to remember that the Internet is a changing source of information and will hopefully contain more relevant entries in the future.
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spelling pubmed-97778432022-12-23 Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy Tkaczuk, Magdalena Zakrzewski, Dawid M. Król, Maria Zawadzka, Marta Waszak, Przemysław M. Mazurkiewicz-Bełdzińska, Maria Healthcare (Basel) Article Social media is one of the most common sources of medical information. We aimed to evaluate the information contained on websites, including social media and descriptions of fundraisers, in terms of the reliability of knowledge about SMA and gene therapy with onasemnogen abeparvovec. We used a set of available online links found using the Newspointtool. Initially, 1525 texts were included in the study, and after applying the inclusion and exclusion criteria, 112 texts were qualified for analysis using the DISCERN scale and the set of questions prepared by the authors. We observed that most of the texts had poor (48.65%) and medium (27.03%) reliability in the final reliability assessment. All the texts selected for the study were related to gene therapy, although few contained key information about it. In addition, the authors of the entries used various words and phrases that influenced the readers’ perceptions of the text. Of the analyzed sources, 68.8% had an emotional component. Social media is a poor source of information about gene therapy for SMA in Poland. The analyzed texts do not provide a full and complete description of the SMA problem. However, it is important to remember that the Internet is a changing source of information and will hopefully contain more relevant entries in the future. MDPI 2022-12-04 /pmc/articles/PMC9777843/ /pubmed/36553969 http://dx.doi.org/10.3390/healthcare10122445 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Tkaczuk, Magdalena
Zakrzewski, Dawid M.
Król, Maria
Zawadzka, Marta
Waszak, Przemysław M.
Mazurkiewicz-Bełdzińska, Maria
Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy
title Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy
title_full Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy
title_fullStr Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy
title_full_unstemmed Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy
title_short Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy
title_sort social media as a source of knowledge about gene therapy for spinal muscular atrophy
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9777843/
https://www.ncbi.nlm.nih.gov/pubmed/36553969
http://dx.doi.org/10.3390/healthcare10122445
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