The socioeconomic epidemiology of inherited retinal diseases in Portugal
Autor(a) principal: | |
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Data de Publicação: | 2024 |
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/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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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 |
format |
article |
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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1817546004064370688 |