Online information search by people with multiple sclerosis: a systematic review
| Autor(a) principal: | |
|---|---|
| Data de Publicação: | 2023 |
| Outros Autores: | , , , |
| Tipo de documento: | Artigo |
| Idioma: | eng |
| Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
| Texto Completo: | http://hdl.handle.net/10451/60250 |
Resumo: | © 2023 The Author(s). Published by Elsevier B.V. This is an open access article under the CC BY-NC license (http://creativecommons.org/licenses/by- nc/4.0/) |
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Online information search by people with multiple sclerosis: a systematic reviewDigitalInformation searchInternetMultiple SclerosisOnline© 2023 The Author(s). Published by Elsevier B.V. This is an open access article under the CC BY-NC license (http://creativecommons.org/licenses/by- nc/4.0/)Background: People with Multiple Sclerosis (pwMS) search for information online about various aspects of living with their disease, but details about patterns of searching and outcomes are unclear. This means that opportunities to leverage online resources to support pwMS, and to enhance shared decision making, may be missed. We aimed to do a systematic review of the literature on digital information searching by pwMS. Methods: We performed a systematic search for studies assessing online information seeking of pwMS in MEDLINE and JSTOR databases. Studies were screened and selected by two investigators. All study designs were included, risk of bias was assessed using the Critical Appraisal Skills Programme qualitative checklist. Reports were assessed for the proportion of patients searching information online about MS, type of information sought, online tools used by patients, perceived quality of the information acquired, and impact of online searching in pwMS. Results: We identified 5 studies, including 10,090 patients. Most pwMS search for information online (53.8-82 %), which they rarely discuss with physicians. The most common topics are treatment, general disease information, symptoms, lifestyle recommendations, prognosis, and coping strategies. Patients that are younger, have a shorter disease duration, primary progressive MS, and during periods of disease worsening, are more likely to use online resources. Online information is perceived as low quality by pwMS. Conclusions: Online information search is prevalent among pwMS. Despite concerns with the quality of the available information, only a minority of pwMS will discuss the information found with their physician. These findings highlight the importance of developing and providing quality online information resources for pwMS.This research study was supported by an internal grant from IESEG School of Management (reference NDRCRECH). DB has received funding from the Portuguese Foundation for Science and Technology (Fundação para a Ciência e Tecnologia – reference 2022.10667.BD) and Santa Casa da Misericórdia de Lisboa (Prémio João Lobo Antunes). MLR received a grant from the Portuguese Multiple Sclerosis Study Group (Bolsa de Apoio a Estágio em Doenças Desmielinizantes, Grupo de Estudos de Esclerose Múltipla - GEEM).ElsevierRepositório da Universidade de LisboaBerhanu, DavidLeal Rato, MiguelCanhoto, Ana IsabelVieira da Cunha, JoãoGeraldes, Ruth2023-11-09T12:35:59Z20232023-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10451/60250engMult Scler Relat Disord. 2023 Sep 29:79:1050322211-034810.1016/j.msard.2023.1050322211-0356info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-11-13T01:19:03Zoai:repositorio.ul.pt:10451/60250Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T22:38:11.899221Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
| dc.title.none.fl_str_mv |
Online information search by people with multiple sclerosis: a systematic review |
| title |
Online information search by people with multiple sclerosis: a systematic review |
| spellingShingle |
Online information search by people with multiple sclerosis: a systematic review Berhanu, David Digital Information search Internet Multiple Sclerosis Online |
| title_short |
Online information search by people with multiple sclerosis: a systematic review |
| title_full |
Online information search by people with multiple sclerosis: a systematic review |
| title_fullStr |
Online information search by people with multiple sclerosis: a systematic review |
| title_full_unstemmed |
Online information search by people with multiple sclerosis: a systematic review |
| title_sort |
Online information search by people with multiple sclerosis: a systematic review |
| author |
Berhanu, David |
| author_facet |
Berhanu, David Leal Rato, Miguel Canhoto, Ana Isabel Vieira da Cunha, João Geraldes, Ruth |
| author_role |
author |
| author2 |
Leal Rato, Miguel Canhoto, Ana Isabel Vieira da Cunha, João Geraldes, Ruth |
| author2_role |
author author author author |
| dc.contributor.none.fl_str_mv |
Repositório da Universidade de Lisboa |
| dc.contributor.author.fl_str_mv |
Berhanu, David Leal Rato, Miguel Canhoto, Ana Isabel Vieira da Cunha, João Geraldes, Ruth |
| dc.subject.por.fl_str_mv |
Digital Information search Internet Multiple Sclerosis Online |
| topic |
Digital Information search Internet Multiple Sclerosis Online |
| description |
© 2023 The Author(s). Published by Elsevier B.V. This is an open access article under the CC BY-NC license (http://creativecommons.org/licenses/by- nc/4.0/) |
| publishDate |
2023 |
| dc.date.none.fl_str_mv |
2023-11-09T12:35:59Z 2023 2023-01-01T00:00:00Z |
| dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
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info:eu-repo/semantics/article |
| format |
article |
| status_str |
publishedVersion |
| dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10451/60250 |
| url |
http://hdl.handle.net/10451/60250 |
| dc.language.iso.fl_str_mv |
eng |
| language |
eng |
| dc.relation.none.fl_str_mv |
Mult Scler Relat Disord. 2023 Sep 29:79:105032 2211-0348 10.1016/j.msard.2023.105032 2211-0356 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
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Elsevier |
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Elsevier |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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