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.
journal_name
Med Clin (Barc)journal_title
Medicina clinicaauthors
Avellaneda Fernández A,Layola M,Izquierdo Martínez M,Guilera M,Badia Llach X,Ramón JRdoi
10.1157/13112096subject
Has Abstractpub_date
2007-11-10 00:00:00pages
646-51issue
17eissn
0025-7753issn
1578-8989pii
S0025-7753(07)72951-2journal_volume
129pub_type
杂志文章相关文献
MEDICINA CLINICA文献大全abstract：BACKGROUND:For biomedical research findings to contribute toward health gains they must reach clinicians. Academic journals have historically been considered important information sources. Birken and Parkin found seven journals to most consistently contain the best pediatric evidence and, of these seven, four were gene...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/S0025-7753(08)76404-2
更新日期：2008-12-01 00:00:00
abstract：BASIS AND OBJECTIVE:Hepatic steatosis, also known as non-alcoholic fatty liver (NAFL), is the most frequent liver disease in obese children. Due to an increase in infantile obesity, it is experiencing a significant increment in incidence. Our objetives are: Estimate the prevalence of NAFL in children with excess weight...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/j.medcli.2014.02.018
更新日期：2015-01-20 00:00:00
abstract：BACKGROUND AND OBJECTIVE:Forced respiratory volume in first second spirometry is currently used to diagnose chronic obstructive pulmonary disease. However, this technique does not always provide a reliable short-term prognosis, especially in patients with associated morbidity. We propose that specific health-related qu...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1157/13058683
更新日期：2004-03-06 00:00:00
abstract：:In recent years the interest in understanding the clinical significance and the pathogenic mechanisms involved in vascular calcification has rapidly increased. There are three reasons that explain this increasing interest in vascular calcification by nephrologists: a) cardiovascular disease is the leading cause of dea...
journal_title：Medicina clinica
pub_type： 杂志文章,评审
doi：10.1016/S0025-7753(09)70962-5
更新日期：2009-05-01 00:00:00
abstract：OBJECTIVE:To determine if a more simplified medication regimen is associated with survival in polypathological patients. METHODS:Multicentre cohort study. We included polypathological patients admitted to internal medicine wards between March 1st and June 30rd, 2011. Patients that died during admission and readmission...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/j.medcli.2019.06.023
更新日期：2020-04-10 00:00:00
abstract：BACKGROUND:Loss of heterozygosity (LOH) at 5q21, where the APC/MCC genes reside, is one of the genetic alterations that characterizes lung cancer. The aim of this study was to analyse LOH frequency on chromosome 5q21 in patients with non-small cell lung cancer and its relationship with TNM staging and histological subt...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：
更新日期：1997-05-31 00:00:00
abstract：BACKGROUND AND OBJECTIVE:To assess the relationship between reputation of hospitals, as determined by specialists' opinion, and their scientific production. MATERIAL AND METHOD:A questionnaire was sent to a sample of members of the Spanish Societies of Cardiology, Digestive Diseases, Neurology and Otorhinolaryngology....
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1157/13089112
更新日期：2006-05-27 00:00:00
abstract：BACKGROUND AND OBJECTIVES:Although health risks associated to excessive body fat increase with small increases in body weight, measurement of body fat is usually grouped in very few categories. The aim of our study was to assess whether the risk for a combined end-point including the incidence of either hypertension an...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/j.medcli.2009.02.016
更新日期：2009-05-09 00:00:00
abstract：BACKGROUND:The aim of this study was to know the opinion of the professionals (physicians and nursing staff) of intensive medicine concerning aspects such as informed consent, family participation in health care decisions, the possibility of not undertaking resuscitation manoeuvers and limiting care in determined cases...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：
更新日期：1994-04-16 00:00:00
abstract：:A case of rapidly progressive glomerular disease with 100% of epithelial crescents completely enveloping each glomerulus, prolonged anuria and renal failure requiring dialysis. There were no indications of either streptococcal etiology or systemic disease. Improvement in renal function in response to plasmapheresis an...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：
更新日期：1981-06-10 00:00:00
abstract：BACKGROUND AND OBJECTIVE:The association between the presence of the allele APOE*epsilon4 (apolipoprotein E) and sporadic Alzheimer disease (AD) has been long established. However, the possible influence of other genetic factors is still under debate. This study investigated the role of the a 1-antichymotrypsin (ACT) g...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/s0025-7753(04)74479-6
更新日期：2004-09-04 00:00:00
abstract：:The association of deep vein thrombosis with systemic necrotizing vasculitis is infrequent. Herein are referred two patients with microscopic polyarteritis and one patient with overlap syndrome who developed deep vein thrombosis which complicated in two cases with pulmonary embolism. The clinical features and the path...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：
更新日期：1993-12-11 00:00:00
abstract：:Practicing sports at a professional level requires the body to be in good health. The fact of carrying out a continuous and high intensity physical activity in the presence of pathological conditions and/or a maladaptation of the body can be detrimental to the athletes' health and, therefore, to their performance. Man...
journal_title：Medicina clinica
pub_type： 杂志文章,评审
doi：10.1016/j.medcli.2017.09.008
更新日期：2018-04-13 00:00:00
abstract：BACKGROUND:To review the clinical findings of pancreatic tuberculosis and to establish a differential diagnosis with pancreatic tumours. PATIENTS AND METHODS:To describe three cases of pancreatic tuberculosis diagnosed in a 850 bed teaching hospital during the last two years. RESULTS:In the three case the imaging pro...
journal_title：Medicina clinica
pub_type： 杂志文章,评审
doi：10.1016/s0025-7753(00)71592-2
更新日期：2000-10-14 00:00:00
abstract：FOUNDATIONS AND AIM:The aim of this study is to analyze the CHADS2 score as a marker of the risk of mortality in hypertensive patients, with and without the presence of atrial fibrillation. METHODS:We included 1,003 hypertensive patients≥65 years. Risk factors, and CHADS2 score were recorded among other factors, as we...
journal_title：Medicina clinica
pub_type： 杂志文章,多中心研究
doi：10.1016/j.medcli.2016.03.015
更新日期：2016-06-03 00:00:00
abstract：BACKGROUND AND OBJECTIVE:The aim of the present study was to investigate the factors influencing CRP serum levels in the diabetic population. PATIENTS AND METHOD:Eighty-six patients with type 2 diabetes mellitus were prospectively included. The following variables were considered: age, gender, smoking habit, body mass...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1157/13072422
更新日期：2005-03-12 00:00:00
abstract：BACKGROUND AND OBJECTIVE:Hypertension is the most prevalent risk factor in the community. The aim of this study was to describe the risk factors for the progression of blood pressure (BP) from correct values. SUBJECTS AND METHODS:Prospective and observational study with 7 years follow-up. BP>140/90 mmHg was considered...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/j.medcli.2012.09.026
更新日期：2013-06-04 00:00:00
abstract：UNLABELLED:Most experts, specially from Anglo-Saxon countries, recommend a low fat diet in order to prevent cardiovascular diseases. However, mortality rate by ischemic cardiopathy is low in Mediterranean countries, probably because of the consumption of a Mediterranean diet, with a high level of monounsaturated fats p...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/s0025-7753(00)71561-2
更新日期：2000-09-30 00:00:00
abstract：OBJECTIVE:To compare the occurrence of haemorrhages among the different oral anticoagulants (OAC) and to analyse factors that influence it. MATERIAL AND METHODS:Single-centre, observational, retrospective study. After studying the total population treated with OAC, patients who were treated with an OAC from July 2015 ...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/j.medcli.2018.10.006
更新日期：2019-06-21 00:00:00
abstract：BACKGROUND AND OBJECTIVE:To study the effects of antenatal corticosteroids treatment to promote fetal lung maturation, on fetal growth, depending on the number of the courses administered. PATIENTS AND METHOD:The study was based on data from the Spanish Collaborative Study of Congenital Malformations (ECEMC), analysin...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1157/13092436
更新日期：2006-09-16 00:00:00
abstract：BACKGROUND:Advanced atrioventricular block (AB) during acute myocardial infarction (AMI), characterizes a high-risk subgroup of patients. Our aim was to determine the prognostic significance of AB and its possible peculiarities in relation to infarction localization and/or the thrombolytic therapy. PATIENTS AND METHOD...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/s0025-7753(00)71282-6
更新日期：2000-03-11 00:00:00
abstract：BACKGROUND AND OBJECTIVE:The description of different forms of PSA has opened a new strategy in the diagnosis of prostate cancer. The measurement of the ratio between free PSA and PSA in the group of patients with a PSA level between 4 and 10 ng/ml decreases the number of negative biopsies. The aim of our study was to ...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/s0025-7753(04)75311-7
更新日期：2004-02-28 00:00:00
abstract：OBJECTIVES:To analyze the results, efficacy and safety of unilateral microelectrode guided pallidotomy for the treatment of advanced Parkinson's disease, three months and one year after surgery. PATIENTS AND METHODS:23 patients with advanced Parkinson's disease (mean age 58.9 years and mean disease duration 14.4 years...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：
更新日期：2000-02-19 00:00:00
abstract：BACKGROUND AND OBJECTIVE:The aim of the study was to assess the effect of adding spironolactone to hypertensive resistant (HTR) patients and characterize those who respond effectively. PATIENTS AND METHOD:Observational retrospective study on outpatients with HTR (being treated with at least 3 drugs at full doses, one ...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1157/13126215
更新日期：2008-10-04 00:00:00
abstract：UNLABELLED:BACKGROUND AND OJECTIVE: Tobacco attributable mortality offers a complementary view to smoking prevalence, giving an estimate of its impact at population level. The purpose of this study is to measure the impact, using mortality figures, of tobacco consumption in the Galician population over 34 years from 19...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/j.medcli.2010.10.009
更新日期：2011-09-10 00:00:00
abstract：:Cephotaxime (HR 756) is a new cephalosporin antibiotic of wide spectrum and extraordinary activity, suitable for parenteral administration. It is highly resistant to the beta-lactamases of Gram negative bacilli, being thus especially active against microorganisms such as indole-positive Proteus, Serratia marcencens, a...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：
更新日期：1980-11-25 00:00:00
abstract：BACKGROUND AND OBJECTIVE:More information is needed on hypertension control in clinical practice, which includes taking at least two blood pressure (BP) readings and taking into account surgery times and previous antihypertensive drug intake. Our study aimed to assess the optimum degree of BP control in a broad sample ...
journal_title：Medicina clinica
pub_type： 杂志文章,多中心研究
doi：10.1016/s0025-7753(04)74183-4
更新日期：2004-02-14 00:00:00
abstract：BACKGROUND:A low folic acid (FA) intake may increase the risk of neural tube defects (NTD). We estimated the proportion of women with a FA intake < 400 micrograms/day, at the Valencian Region, exploring those factors associated with a FA intake < 400 micrograms/day. SUBJECTS AND METHOD:Daily FA intake was estimated fo...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：10.1016/s0025-7753(00)71316-9
更新日期：2000-03-25 00:00:00
abstract：:To evaluate the economic impact of osteoporosis, the cost of acute attention to the osteoporotic hip fractures recorded in Barcelona during one year was investigated. The hospital records of 8637 beds (85.64% of the overall number in the city) were reviewed and the cases seen in inhabitants aged 45 years or more durin...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：
更新日期：1989-05-20 00:00:00
abstract：:The case of a 31 year-old intravenous drug addict female patient with infection by the human immunodeficiency virus who had recurrent cardiac tamponade and who was diagnosed by pericardic biopsy as Kaposi's sarcoma is reported. The patient demonstrated involvement by cutaneous, mucosal, lymph node and probably pleurop...
journal_title：Medicina clinica
pub_type： 杂志文章
doi：
更新日期：1994-04-09 00:00:00
