Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE.

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.

[Age-related effects on mental ability and their associations with personal characteristics among female teachers]. / Altersbezogene Effekte mentaler Leistungsfähigkeit und deren Zusammenhang zu personenbezogenen Merkmalen bei Lehrerinnen.

AIM: Mental ability is considered as a resource that supports coping processes among teachers. It consists of fluid speed-orientated components and crystallised precision-orientated components. Both components are subject to differential aging processes and are affected by personal factors. In this context, the effects of age and the correlation between mental ability and personal factors are analysed for a set of younger and older female teachers. METHODS: The data collection was carried out during extended preventive medical examinations at schools in Saxony. The analysis included the data of 252 female teachers. Mental ability was measured with standardised and validated instruments. Data were collected for the verbal and cognitive abilities to respond, to reset, to concentrate, to remember and to orientate as well as for strategy development. These variables were assigned to the speed-orientated and the precision-orientated components on the basis of measurements of time and errors. Personal factors included sense of coherence, susceptibility to stress, incapacity to recover, mental health and health complaints. In order to analyse age effects, the female teachers were divided into 2 age groups (< 45 and 45 years). RESULTS: The fluid components of mental ability showed significant but small effects in favour of the younger age group. No significant difference was found for the crystallised components among the age groups. In both age groups mental ability had a more favourable value for the teachers compared to the general population. The personal factors showed no differences for younger and older teachers, with the exception of physical health complaints which were mentioned more often by older teachers. Only a few very small correlations were detectable between the components of mental ability and personal factors. CONCLUSIONS: Besides the favourable mental ability of the teachers, the hypothesised and expected age effects are confirmed: the fluid abilities decline with age while the crystallised abilities remain stable. This is a starting point for prevention and intervention. Training allows maintenance or an improvement of mental ability at any age. Multidirectional correlations exist between mental ability and personal factors. Since mental ability comprises far more components than those considered in this study, the research approach should be expanded in the future.