Details
| Translated title of the contribution | Healthcare services for people in Lower Saxony (Germany) suffering from a rare disease: Findings from a survey among medical professionals |
|---|---|
| Original language | Multiple languages |
| Pages (from-to) | 36-44 |
| Number of pages | 9 |
| Journal | Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen |
| Volume | 113 |
| Early online date | 3 Jun 2016 |
| Publication status | Published - 2016 |
Abstract
Background In the European Union, about 30 million people are affected by one of the 7,000 to 8,000 diseases being defined as rare. In Germany alone, an estimated 4 million people suffer from a rare disease. In many cases, therapeutic options and knowledge of specific rare diseases are strongly limited. Objective The aim of this study was to identify the deficits and challenges confronting healthcare services for people suffering from a rare disease from the medical professional's perspective. Method As many as 530 medical professionals were invited to complete an online questionnaire, which was also available on the website of the General Medical Council of Lower Saxony. The questionnaire focused on questions in the following fields: structure of the medical care system; diagnosis and therapy; information sources and information exchange; and improvement of healthcare situation. Data were analyzed using IBM SPSS 22. Result We received 65 completed questionnaires. The evaluation indicates deficits in the medical services provided for people with a rare disease and shortcomings in the communication between clinical disciplines. In addition, diagnostic and therapeutic options are limited, and quality-tested information is rare. Conclusion Many of the identified deficits have already been addressed in the German national plan of action for people affected by rare diseases. Furthermore, newly discovered deficits have been evaluated. The German government implemented healthcare structures to improve healthcare services for people with rare diseases. However, budget deficits for specialized structures have occurred inhibiting the expansion of healthcare services. Moreover, many patients need systemic treatment requiring the further development of interdisciplinary care.
ASJC Scopus subject areas
- Medicine(all)
- Medicine (miscellaneous)
- Social Sciences(all)
- Education
- Medicine(all)
- Health Policy
Sustainable Development Goals
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In: Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen, Vol. 113, 2016, p. 36-44.
Research output: Contribution to journal › Article › Research › peer review
}
TY - JOUR
T1 - Die Versorgung von Menschen mit seltenen Erkrankungen in Niedersachsen
T2 - Ergebnisse einer Ärztebefragung
AU - Pauer, Frédéric
AU - Pflaum, Uljana
AU - Lührs, Verena
AU - Frank, Martin
AU - Graf von der Schulenburg, J. Matthias
PY - 2016
Y1 - 2016
N2 - Background In the European Union, about 30 million people are affected by one of the 7,000 to 8,000 diseases being defined as rare. In Germany alone, an estimated 4 million people suffer from a rare disease. In many cases, therapeutic options and knowledge of specific rare diseases are strongly limited. Objective The aim of this study was to identify the deficits and challenges confronting healthcare services for people suffering from a rare disease from the medical professional's perspective. Method As many as 530 medical professionals were invited to complete an online questionnaire, which was also available on the website of the General Medical Council of Lower Saxony. The questionnaire focused on questions in the following fields: structure of the medical care system; diagnosis and therapy; information sources and information exchange; and improvement of healthcare situation. Data were analyzed using IBM SPSS 22. Result We received 65 completed questionnaires. The evaluation indicates deficits in the medical services provided for people with a rare disease and shortcomings in the communication between clinical disciplines. In addition, diagnostic and therapeutic options are limited, and quality-tested information is rare. Conclusion Many of the identified deficits have already been addressed in the German national plan of action for people affected by rare diseases. Furthermore, newly discovered deficits have been evaluated. The German government implemented healthcare structures to improve healthcare services for people with rare diseases. However, budget deficits for specialized structures have occurred inhibiting the expansion of healthcare services. Moreover, many patients need systemic treatment requiring the further development of interdisciplinary care.
AB - Background In the European Union, about 30 million people are affected by one of the 7,000 to 8,000 diseases being defined as rare. In Germany alone, an estimated 4 million people suffer from a rare disease. In many cases, therapeutic options and knowledge of specific rare diseases are strongly limited. Objective The aim of this study was to identify the deficits and challenges confronting healthcare services for people suffering from a rare disease from the medical professional's perspective. Method As many as 530 medical professionals were invited to complete an online questionnaire, which was also available on the website of the General Medical Council of Lower Saxony. The questionnaire focused on questions in the following fields: structure of the medical care system; diagnosis and therapy; information sources and information exchange; and improvement of healthcare situation. Data were analyzed using IBM SPSS 22. Result We received 65 completed questionnaires. The evaluation indicates deficits in the medical services provided for people with a rare disease and shortcomings in the communication between clinical disciplines. In addition, diagnostic and therapeutic options are limited, and quality-tested information is rare. Conclusion Many of the identified deficits have already been addressed in the German national plan of action for people affected by rare diseases. Furthermore, newly discovered deficits have been evaluated. The German government implemented healthcare structures to improve healthcare services for people with rare diseases. However, budget deficits for specialized structures have occurred inhibiting the expansion of healthcare services. Moreover, many patients need systemic treatment requiring the further development of interdisciplinary care.
KW - health policy
KW - healthcare research
KW - healthcare System
KW - national plan of action
KW - Rare diseases
UR - http://www.scopus.com/inward/record.url?scp=84971671147&partnerID=8YFLogxK
U2 - 10.1016/j.zefq.2016.05.003
DO - 10.1016/j.zefq.2016.05.003
M3 - Article
C2 - 27480187
AN - SCOPUS:84971671147
VL - 113
SP - 36
EP - 44
JO - Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen
JF - Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen
SN - 1865-9217
ER -