Hanisch Marcel, Wiemann Sabrina, Bohner Lauren, Jung Susanne, Kleinheinz Johannes
Department of Oral, Maxillofacial and Facial Surgery, University Hospital Munster, Munster, Germany.
Cent Eur J Public Health. 2020 Mar;28(1):82-84. doi: 10.21101/cejph.a5652.
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.
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.
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".
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.
在德国，约有400万人受罕见病影响，在欧盟则有3000万人。2013年，德国通过了一项针对罕见病患者的国家行动计划，其目标还包括改善信息状况，为受影响的患者及其家庭更好地收集信息。自那时起，各种信息来源和医疗保健结构已可供使用。本研究的目的是评估受影响人群中关于罕见病信息来源和医疗保健中心的知识状况。
该研究以匿名调查的方式在德国慢性罕见病联盟（德语缩写ACHSE e. V.）的成员协会中开展。为此，设计了一份问卷，除了关于性别、年龄和疾病的问题外，还包括关于对医疗保健中心或专家中心的了解以及德国罕见病信息来源的自由文本输入。
共有484名患有96种不同罕见病的个体参与了调查。其中，74.47%的人知晓针对其罕见病类型进行治疗的医疗或牙科保健中心；69.31%的人将自助组织作为信息来源，只有少数受访者知道政府资助的“se-atlas”和“Orphanet”。
大多数受访者知道医疗保健中心，大多数参与者将自助组织作为信息来源，然而，政府支持的门户网站在很大程度上并不为人所知，因此在这方面需要进一步宣传。
