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The socioeconomic epidemiology of inherited retinal diseases in Portugal

2024-04-09Artigo científico Acesso aberto
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dc.contributor.authorMarta, Ana
dc.contributor.authorMarques, João Pedro
dc.contributor.authorSantos, Cristina
dc.contributor.authorCoutinho-Santos, Luísa
dc.contributor.authorVaz-Pereira, Sara
dc.contributor.authorCosta, José
dc.contributor.authorArede, Pedro
dc.contributor.authorFélix, Raquel
dc.contributor.authorGeada, Sara
dc.contributor.authorGouveia, Nuno
dc.contributor.authorSilva, Rui
dc.contributor.authorBaptista, Margarida
dc.contributor.authorLume, Miguel
dc.contributor.authorParreira, Ricardo
dc.contributor.authorAzevedo Soares, Célia
dc.contributor.authorMenéres, Maria João
dc.contributor.authorLemos, Carolina
dc.contributor.authorMelo Beirão, João
dc.contributor.institutionNOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
dc.contributor.institutioniNOVA4Health - pólo NMS
dc.contributor.pblSpringer Verlag
dc.date.accessioned2024-04-24T00:45:56Z
dc.date.available2024-04-24T00:45:56Z
dc.date.issued2024-04-09
dc.description.abstractBackground: 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.en
dc.description.versionpublishersversion
dc.description.versionpublished
dc.format.extent1603008
dc.identifier.doi10.1186/s13023-024-03161-6
dc.identifier.issn1750-1172
dc.identifier.otherPURE: 88525830
dc.identifier.otherPURE UUID: 7a3fba5b-755c-4cf7-bc62-b64fffcbb358
dc.identifier.otherScopus: 85189972870
dc.identifier.urihttp://hdl.handle.net/10362/166536
dc.identifier.urlhttps://www.scopus.com/pages/publications/85189972870
dc.language.isoeng
dc.peerreviewedyes
dc.subjectEconomics
dc.subjectEpidemiology
dc.subjectInherited retinal diseases
dc.subjectSocial
dc.subjectGenetics(clinical)
dc.subjectPharmacology (medical)
dc.subjectSDG 3 - Good Health and Well-being
dc.titleThe socioeconomic epidemiology of inherited retinal diseases in Portugalen
dc.typejournal article
degois.publication.issue1
degois.publication.titleOrphanet Journal of Rare Diseases
degois.publication.volume19
dspace.entity.typePublication
rcaap.rightsopenAccess

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