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State of knowledge about information sources and health care centres for rare diseases among affected people in Germany
- Source :
- Central European Journal of Public Health. 28:82-84
- Publication Year :
- 2020
- Publisher :
- National Institute of Public Health, 2020.
-
Abstract
- Objectives: About four million people are affected by rare diseases in Germany and 30 million in the EU. In 2013, a national action plan for people with rare diseases was adopted in Germany which is also aimed at improving the information situation and better gathering of information for affected patients and their families. Since then, various sources of information and medical care structures have been made available. The aim of this study was to evaluate the state of knowledge about information sources and health care centres for rare diseases among those affected. Methods: The study was carried out as anonymous survey among the member associations of the German Alliance for Chronic Rare Diseases (German acronym ACHSE e. V.). For this, a questionnaire was developed which in addition to questions on gender, age and disease comprised free text input referring to knowledge of health care centres or expert centres and source of information on rare diseases in Germany. Results: A total of 484 individuals suffering from 96 different rare diseases participated in the survey. Of these, 74.47% are aware of medical or dental care centres for treatment of their types of rare disease; 69.31% use self-help groups as a source of information, only a few respondents know government-sponsored "se-atlas" and "Orphanet". Conclusion: The majority of the respondents know medical care centres, most participants use self-help groups as information source, however, government-supported portals are largely unknown so that there is a need for further information in this regard.
- Subjects :
- Health Knowledge, Attitudes, Practice
medicine.medical_specialty
Disease
German
03 medical and health sciences
Rare Diseases
0302 clinical medicine
Germany
Surveys and Questionnaires
Health care
Humans
Medicine
030212 general & internal medicine
Acronym
Information Services
0303 health sciences
business.industry
Public Health, Environmental and Occupational Health
030311 toxicology
General Medicine
language.human_language
Alliance
Action plan
Family medicine
language
Information source
Health Facilities
business
Rare disease
Subjects
Details
- ISSN :
- 18031048 and 12107778
- Volume :
- 28
- Database :
- OpenAIRE
- Journal :
- Central European Journal of Public Health
- Accession number :
- edsair.doi.dedup.....568af64704533537a797485288005ade