Análisis de la distancia a centros y unidades de referencia en enfermedades raras en España
- Juan R. Coca 1
- Julio Fernández-Portela 2
- Alberto Soto-Sánchez 1
- 1 Unidad de Investigación Social en Salud y Enfermedades Raras
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2
Universidad Nacional de Educación a Distancia
info
ISSN: 0717-036X, 0719-4404
Year of publication: 2021
Issue: 27
Pages: 331-356
Type: Article
More publications in: Notas históricas y geográficas
Abstract
Research on rare diseases transcends the biomedical field. This paper analyses, in an interdisciplinary manner, the geographical distance to existing centers of reference in Spain. The cartographic analysis shows the existing concentration and the distance (1200 km on the Iberian Peninsula and more than 2400 km from the Canary Islands) that patients and their families would have to travel from the most distant places. Added to this are the psychological and social effects related to this distance. These effects can be linked to stress, uncertainty, feelings of isolation, etc. It therefore raises the possibility of establishing communication networks between medical professionals to share knowledge and thus "bring" specialized treatment and diagnosis closer to the patient, thereby reducing the potential negative effects.