Background The TRANSLATE-NAMSE project with the strengthening of the centers for rare diseases with their affiliation to the European Reference Networks was a major step towards the implementation of the German National Plan of Action for People with Rare Diseases establishing better care structures. As primary care physicians, general practitioners and pediatricians play a central role in the diagnosis of patients with rare disease, as it is usually them referring to specialists and rare disease centers. Therefore, the interface management between primary care physicians and the centers for rare diseases is of particular importance. Methods In a mixed-method-approach an anonymous postal survey of 1,500 randomly selected primary care physicians in Germany was conducted with focus on (1) knowledge about a center for rare diseases and how it works, (2) in case of cooperation, satisfaction with the services provided by centers, and (3) expectations and needs they have with regard to the centers. In addition, in-depth telephone interviews were conducted with physicians who had already referred patients to a center. Results In total, 248 physicians responded to the survey, and 15 primary care physicians were interviewed. We observed a wide lack of knowledge about the existence of (45.6% confirmed to know at least one center) about how to access rare disease centers (50.4% of those who know a center confirmed knowledge) and what the center specializes in. In case of cooperation the evaluation was mostly positive. Conclusion To improve medical care, the interplay between primary care physicians and rare disease centers needs to be strengthened. (1) To improve the communication, the objectives and functioning of the rare disease centers should become more visible. (2) Other projects dealing with the analysis and improvement of interface management between centers and primary care physicians, as described in the National Plan of Action for People with Rare Diseases, need to be implemented immediately. (3) If the project is evaluated positively, the structures of TRANSLATE-NAMSE should be introduced nationwide into the German health care system to ensure comprehensive, quality-assured care for people with rare diseases with special consideration of the key role of primary care physicians—also taking into account the financial expenditures of this new care model.
"Care" is without doubt among the most important concepts in healthcare. The very word "healthcare" bears witness to this fact, indicating what the healthcare system as a whole and the individual actions taking place within healthcare are all about-namely, to provide care. The concept of care plays an important role for the professional identity of caregivers, and it is part of the expectation of care receivers. This can easily be forgotten given that in public and academic discourse, issues such as costs, prevention, the just distribution of scarce resources and the patient's personal responsibility often figure more prominently than care.Care is not only a descriptive concept, it also conveys a normative orientation. The term "care" enables one to evaluate different courses of action in healthcare. What is more, different courses of action can correspond more or less closely to what one perceives as good care. As there are standards and guidelines for and best practices of good care, care providers can ask themselves whether what they do constitutes good care. The question of whether the healthcare system as a whole as well as specific
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