The socioeconomic epidemiology of inherited retinal diseases in Portugal

Detalhes bibliográficos
Autor(a) principal: Marta, Ana
Data de Publicação: 2024
Outros Autores: Marques, João Pedro, Santos, Cristina, Coutinho-Santos, Luísa, Vaz-Pereira, Sara, Costa, José, Arede, Pedro, Félix, Raquel, Geada, Sara, Gouveia, Nuno, Silva, Rui, Baptista, Margarida, Lume, Miguel, Parreira, Ricardo, Azevedo Soares, Célia, Menéres, Maria João, Lemos, Carolina, Melo Beirão, João
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10362/166536
Resumo: Background: Inherited retinal diseases (IRDs) are a group of rare degenerative disorders of the retina that can lead to blindness from birth to late middle age. Knowing the target population and its resources is essential to better plan support measures. The aim of this study was to evaluate the socioeconomic characteristics of regions in Portugal where IRD patients reside to inform the planning of vision aid and rehabilitation intervention measures. Results: This study included 1082 patients from 973 families, aged 3 to 92 years, with a mean age of 44.8 ± 18.1 years. Patients living with an IRD were identified in 190 of the 308 municipalities. According to this study, the estimated IRD prevalence in Portugal was 10.4 per 100,000 inhabitants, and by municipalities, it ranged from 0 to 131.2 per 100,000 inhabitants. Overall, regions with a higher prevalence of IRD have a lower population density (r=-0.371, p < 0.001), a higher illiteracy rate (r = 0.404, p < 0.001) and an overall older population (r = 0.475, p < 0.001). Additionally, there is a lower proportion of doctor per capita (r = 0.350, p < 0.001), higher social security pensions beneficiaries (r = 0.439, p < 0.001), worse water quality for human consumption (r=-0.194, p = 0.008), fewer audiences at the cinema (r=-0.315, p < 0.001) and lower proportion of foreign guests in tourist accommodations (r=-0.287, p < 0.001). Conclusion: The number of identified patients with IRD varied between regions. Using data from national statistics (PORDATA), we observed differences in socioeconomic characteristics between regions. Multiple targeted aid strategies can be developed to ensure that all IRD patients are granted full clinical and socioeconomic support.
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spelling The socioeconomic epidemiology of inherited retinal diseases in PortugalEconomicsEpidemiologyInherited retinal diseasesSocialGenetics(clinical)Pharmacology (medical)SDG 3 - Good Health and Well-beingBackground: Inherited retinal diseases (IRDs) are a group of rare degenerative disorders of the retina that can lead to blindness from birth to late middle age. Knowing the target population and its resources is essential to better plan support measures. The aim of this study was to evaluate the socioeconomic characteristics of regions in Portugal where IRD patients reside to inform the planning of vision aid and rehabilitation intervention measures. Results: This study included 1082 patients from 973 families, aged 3 to 92 years, with a mean age of 44.8 ± 18.1 years. Patients living with an IRD were identified in 190 of the 308 municipalities. According to this study, the estimated IRD prevalence in Portugal was 10.4 per 100,000 inhabitants, and by municipalities, it ranged from 0 to 131.2 per 100,000 inhabitants. Overall, regions with a higher prevalence of IRD have a lower population density (r=-0.371, p < 0.001), a higher illiteracy rate (r = 0.404, p < 0.001) and an overall older population (r = 0.475, p < 0.001). Additionally, there is a lower proportion of doctor per capita (r = 0.350, p < 0.001), higher social security pensions beneficiaries (r = 0.439, p < 0.001), worse water quality for human consumption (r=-0.194, p = 0.008), fewer audiences at the cinema (r=-0.315, p < 0.001) and lower proportion of foreign guests in tourist accommodations (r=-0.287, p < 0.001). Conclusion: The number of identified patients with IRD varied between regions. Using data from national statistics (PORDATA), we observed differences in socioeconomic characteristics between regions. Multiple targeted aid strategies can be developed to ensure that all IRD patients are granted full clinical and socioeconomic support.NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)iNOVA4Health - pólo NMSRUNMarta, AnaMarques, João PedroSantos, CristinaCoutinho-Santos, LuísaVaz-Pereira, SaraCosta, JoséArede, PedroFélix, RaquelGeada, SaraGouveia, NunoSilva, RuiBaptista, MargaridaLume, MiguelParreira, RicardoAzevedo Soares, CéliaMenéres, Maria JoãoLemos, CarolinaMelo Beirão, João2024-04-24T00:45:56Z2024-04-092024-04-09T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10362/166536eng1750-1172PURE: 88525830https://doi.org/10.1186/s13023-024-03161-6info: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:RCAAP2024-06-10T01:48:18Zoai:run.unl.pt:10362/166536Portal AgregadorONGhttps://www.rcaap.pt/oai/openairemluisa.alvim@gmail.comopendoar:71602024-06-10T01:48:18Repositório 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 The socioeconomic epidemiology of inherited retinal diseases in Portugal
title The socioeconomic epidemiology of inherited retinal diseases in Portugal
spellingShingle The socioeconomic epidemiology of inherited retinal diseases in Portugal
Marta, Ana
Economics
Epidemiology
Inherited retinal diseases
Social
Genetics(clinical)
Pharmacology (medical)
SDG 3 - Good Health and Well-being
title_short The socioeconomic epidemiology of inherited retinal diseases in Portugal
title_full The socioeconomic epidemiology of inherited retinal diseases in Portugal
title_fullStr The socioeconomic epidemiology of inherited retinal diseases in Portugal
title_full_unstemmed The socioeconomic epidemiology of inherited retinal diseases in Portugal
title_sort The socioeconomic epidemiology of inherited retinal diseases in Portugal
author Marta, Ana
author_facet Marta, Ana
Marques, João Pedro
Santos, Cristina
Coutinho-Santos, Luísa
Vaz-Pereira, Sara
Costa, José
Arede, Pedro
Félix, Raquel
Geada, Sara
Gouveia, Nuno
Silva, Rui
Baptista, Margarida
Lume, Miguel
Parreira, Ricardo
Azevedo Soares, Célia
Menéres, Maria João
Lemos, Carolina
Melo Beirão, João
author_role author
author2 Marques, João Pedro
Santos, Cristina
Coutinho-Santos, Luísa
Vaz-Pereira, Sara
Costa, José
Arede, Pedro
Félix, Raquel
Geada, Sara
Gouveia, Nuno
Silva, Rui
Baptista, Margarida
Lume, Miguel
Parreira, Ricardo
Azevedo Soares, Célia
Menéres, Maria João
Lemos, Carolina
Melo Beirão, João
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
iNOVA4Health - pólo NMS
RUN
dc.contributor.author.fl_str_mv Marta, Ana
Marques, João Pedro
Santos, Cristina
Coutinho-Santos, Luísa
Vaz-Pereira, Sara
Costa, José
Arede, Pedro
Félix, Raquel
Geada, Sara
Gouveia, Nuno
Silva, Rui
Baptista, Margarida
Lume, Miguel
Parreira, Ricardo
Azevedo Soares, Célia
Menéres, Maria João
Lemos, Carolina
Melo Beirão, João
dc.subject.por.fl_str_mv Economics
Epidemiology
Inherited retinal diseases
Social
Genetics(clinical)
Pharmacology (medical)
SDG 3 - Good Health and Well-being
topic Economics
Epidemiology
Inherited retinal diseases
Social
Genetics(clinical)
Pharmacology (medical)
SDG 3 - Good Health and Well-being
description Background: Inherited retinal diseases (IRDs) are a group of rare degenerative disorders of the retina that can lead to blindness from birth to late middle age. Knowing the target population and its resources is essential to better plan support measures. The aim of this study was to evaluate the socioeconomic characteristics of regions in Portugal where IRD patients reside to inform the planning of vision aid and rehabilitation intervention measures. Results: This study included 1082 patients from 973 families, aged 3 to 92 years, with a mean age of 44.8 ± 18.1 years. Patients living with an IRD were identified in 190 of the 308 municipalities. According to this study, the estimated IRD prevalence in Portugal was 10.4 per 100,000 inhabitants, and by municipalities, it ranged from 0 to 131.2 per 100,000 inhabitants. Overall, regions with a higher prevalence of IRD have a lower population density (r=-0.371, p < 0.001), a higher illiteracy rate (r = 0.404, p < 0.001) and an overall older population (r = 0.475, p < 0.001). Additionally, there is a lower proportion of doctor per capita (r = 0.350, p < 0.001), higher social security pensions beneficiaries (r = 0.439, p < 0.001), worse water quality for human consumption (r=-0.194, p = 0.008), fewer audiences at the cinema (r=-0.315, p < 0.001) and lower proportion of foreign guests in tourist accommodations (r=-0.287, p < 0.001). Conclusion: The number of identified patients with IRD varied between regions. Using data from national statistics (PORDATA), we observed differences in socioeconomic characteristics between regions. Multiple targeted aid strategies can be developed to ensure that all IRD patients are granted full clinical and socioeconomic support.
publishDate 2024
dc.date.none.fl_str_mv 2024-04-24T00:45:56Z
2024-04-09
2024-04-09T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
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status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10362/166536
url http://hdl.handle.net/10362/166536
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 1750-1172
PURE: 88525830
https://doi.org/10.1186/s13023-024-03161-6
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
institution RCAAP
reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
repository.mail.fl_str_mv mluisa.alvim@gmail.com
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