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

Abstract 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 s...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	D. Druschke, F. Krause, G. Müller, J. Scharfe, G. F. Hoffmann, J. Schmitt, TRANSLATE-NAMSE-Consortium
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	TRANSLATE-NAMSE General practitioners Pediatricians Centers for rare diseases Interface management Medicine R
Acceso en línea:	https://doaj.org/article/d48167600882492aa8e912e0fabd6c0f
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:d48167600882492aa8e912e0fabd6c0f
record_format	dspace
spelling	oai:doaj.org-article:d48167600882492aa8e912e0fabd6c0f2021-11-28T12:22:43ZPotentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE10.1186/s13023-021-02106-71750-1172https://doaj.org/article/d48167600882492aa8e912e0fabd6c0f2021-11-01T00:00:00Zhttps://doi.org/10.1186/s13023-021-02106-7https://doaj.org/toc/1750-1172Abstract 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.D. DruschkeF. KrauseG. MüllerJ. ScharfeG. F. HoffmannJ. SchmittTRANSLATE-NAMSE-ConsortiumBMCarticleTRANSLATE-NAMSEGeneral practitionersPediatriciansCenters for rare diseasesInterface managementMedicineRENOrphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-13 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	TRANSLATE-NAMSE General practitioners Pediatricians Centers for rare diseases Interface management Medicine R
spellingShingle	TRANSLATE-NAMSE General practitioners Pediatricians Centers for rare diseases Interface management Medicine R D. Druschke F. Krause G. Müller J. Scharfe G. F. Hoffmann J. Schmitt TRANSLATE-NAMSE-Consortium Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE
description	Abstract 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.
format	article
author	D. Druschke F. Krause G. Müller J. Scharfe G. F. Hoffmann J. Schmitt TRANSLATE-NAMSE-Consortium
author_facet	D. Druschke F. Krause G. Müller J. Scharfe G. F. Hoffmann J. Schmitt TRANSLATE-NAMSE-Consortium
author_sort	D. Druschke
title	Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE
title_short	Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE
title_full	Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE
title_fullStr	Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE
title_full_unstemmed	Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE
title_sort	potentials and current shortcomings in the cooperation between german centers for rare diseases and primary care physicians: results from the project translate-namse
publisher	BMC
publishDate	2021
url	https://doaj.org/article/d48167600882492aa8e912e0fabd6c0f
work_keys_str_mv	AT ddruschke potentialsandcurrentshortcomingsinthecooperationbetweengermancentersforrarediseasesandprimarycarephysiciansresultsfromtheprojecttranslatenamse AT fkrause potentialsandcurrentshortcomingsinthecooperationbetweengermancentersforrarediseasesandprimarycarephysiciansresultsfromtheprojecttranslatenamse AT gmuller potentialsandcurrentshortcomingsinthecooperationbetweengermancentersforrarediseasesandprimarycarephysiciansresultsfromtheprojecttranslatenamse AT jscharfe potentialsandcurrentshortcomingsinthecooperationbetweengermancentersforrarediseasesandprimarycarephysiciansresultsfromtheprojecttranslatenamse AT gfhoffmann potentialsandcurrentshortcomingsinthecooperationbetweengermancentersforrarediseasesandprimarycarephysiciansresultsfromtheprojecttranslatenamse AT jschmitt potentialsandcurrentshortcomingsinthecooperationbetweengermancentersforrarediseasesandprimarycarephysiciansresultsfromtheprojecttranslatenamse AT translatenamseconsortium potentialsandcurrentshortcomingsinthecooperationbetweengermancentersforrarediseasesandprimarycarephysiciansresultsfromtheprojecttranslatenamse
_version_	1718408046917451776

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

Ejemplares similares