Article: Impacto sociosanitario en pacientes con enfermedades raras (estudio ERES).
2007 Volume 129, Issue 17, Page(s) 646–651
Abstract: Background and objective: The impact and burden of disease of the rare diseases (RD) is not known, also the type of disability that entail. The objective of the work is to analyze the socio-sanitary impact of the RD in Spain.: Patients and method: ... ...
| Title translation | Sociosanitary impact on patients with rare diseases (ERES study). |
|---|---|
| Abstract | Background and objective: The impact and burden of disease of the rare diseases (RD) is not known, also the type of disability that entail. The objective of the work is to analyze the socio-sanitary impact of the RD in Spain. Patients and method: This is a nationwide study. The dimensions used were mobility, personal care and daily activities of the EUROQoL-5D questionnaire to analyze the degree of dependency of the patient with RD. Results: 714 surveys were analyzed. 51.2% were men; 21.1% were children and 78.9% adults. The more frequent laboral status were: retired/pensioner, active and student (35.3%; 29.2%, and 17.1% respectively). In the last quarterly 8.4% of the patients were in situation of transitory labor incapacity: 5.7% men and 11.9% women (p < 0.005). The patients referred disability (slight or moderate degree) in the areas: physical (87.7%), emotional (83.6%), social (75.6%) and sensorial (53%). They presented severe mixed disability (sensorial and physic) in 6.4%. Patient organisations, physicians and Internet (80.1%; 48.2% and 47.3% respectively) were the used sources of information. The patients were more satisfied with doctor's care than social worker's (47% and 2.4% respectively), considering doctors more accessible than social workers (32.4% and 13.1% respectively). Conclusions: RD present a high percentage of disability and dependency, being both more severe in children. The patient organisations are the main source of information. Patients are more satisfied and consider the doctor more accessible than the social worker. This work might serve to make decisions in the socio-sanitary assistance for RD. |
| MeSH term(s) | Adolescent ; Adult ; Aged ; Child ; Cost of Illness ; Cross-Over Studies ; Data Interpretation, Statistical ; Disabled Persons ; Female ; Humans ; Male ; Marital Status ; Middle Aged ; Patient Education as Topic ; Patient Satisfaction ; Quality of Life ; Rare Diseases/economics ; Rare Diseases/therapy ; Socioeconomic Factors ; Spain ; Surveys and Questionnaires |
| Language | Spanish |
| Publishing date | 2007-01-11 |
| Publishing country | Spain |
| Document type | Comparative Study ; English Abstract ; Evaluation Studies ; Journal Article |
| ZDB-ID | 411607-0 |
| ISSN | 1578-8989 ; 0025-7753 |
| ISSN (online) | 1578-8989 |
| ISSN | 0025-7753 |
| DOI | 10.1157/13112096 |
| Database | MEDical Literature Analysis and Retrieval System OnLINE |
More links
Kategorien
In stock of ZB MED Cologne/Königswinter
| Ua VI Zs.279: Show issues | Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 2021: Bestellungen von Artikeln über das Online-Bestellformular ab Jg. 2022: Lesesaal (EG) |
Order via subito
This service is chargeable due to the Delivery terms set by subito. Orders including an article and supplementary material will be classified as separate orders. In these cases, fees will be demanded for each order.