Chapter title |
Rare Diseases Social Epidemiology: Analysis of Inequalities
|
---|---|
Chapter number | 14 |
Book title |
Rare Diseases Epidemiology
|
Published in |
Advances in experimental medicine and biology, August 2010
|
DOI | 10.1007/978-90-481-9485-8_14 |
Pubmed ID | |
Book ISBNs |
978-9-04-819484-1, 978-9-04-819485-8
|
Authors |
Kole A, Faurisson F, Anna Kole, François Faurisson MD, François Faurisson |
Editors |
Manuel Posada de la Paz, Stephen C. Groft |
Abstract |
Rare disease patients experience particular obstacles in accessing high quality healthcare. These obstacles include but are not limited to: (i) lack of scientific knowledge of their disease, (ii) lack of access to correct diagnosis, (iii) delays in diagnosis, (iv) lack of appropriate multidisciplinary healthcare, (v) lack of quality information and support at the time of diagnosis, (vi) undue social consequences, (vii) inequities and difficulties in access to treatment, rehabilitation and care, (viii) dissatisfaction with and loss of confidence in medical and social services, (ix) denied treatment by health professionals and (x) lack of availability of orphan drugs. Three surveys and their subsequent analysis, conducted by the European Organisation for Rare Diseases (EURORDIS), a non-governmental patient driven alliance of European patient organisations, demonstrate several of these obstacles by describing the experience of rare disease patients across 18 rare diseases and over 24 European countries as well as highlighting inequalities that exist between them. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 2 | 100% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 2 | 100% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
United Kingdom | 1 | 1% |
South Africa | 1 | 1% |
Brazil | 1 | 1% |
Unknown | 86 | 97% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Researcher | 14 | 16% |
Student > Bachelor | 12 | 13% |
Student > Master | 10 | 11% |
Other | 8 | 9% |
Student > Ph. D. Student | 8 | 9% |
Other | 21 | 24% |
Unknown | 16 | 18% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 30 | 34% |
Nursing and Health Professions | 13 | 15% |
Biochemistry, Genetics and Molecular Biology | 11 | 12% |
Social Sciences | 4 | 4% |
Agricultural and Biological Sciences | 3 | 3% |
Other | 11 | 12% |
Unknown | 17 | 19% |