[Zurück]

G. Zauner, F. Miksch, N. Popper, G. Endel:
"Evaluation Of Status Quo Of Orphan Diseases And Orphan Drug Prescription In Austria Based On Billing Data And Orphanet Data";
Poster: 15th Biennial European Meeting of the Society for Medical Decision Making, Antwerpen, Belgien; 08.06.2014 - 10.06.2014; in: "15th Biennial European Meeting of the Society for Medical Decision Making: ESMDM Meeting Abstracts", Medical Decision Making, 34 (2014), ISSN: 0272-989x; S. 61.

Purpose: Orphan diseases and their therapies, using orphan
drugs, are becoming the focus of health security institutions in
developed countries. Therefore, an overview analysis of diag-
nosed orphan diseases based on billing data in hospitals as well
as prescription data for Austria is realized and evaluated.
Methods: Split in 2 strategies: (1) the orphan diseases based on
literature research and implementing the data of orphanet, fol-
lowing a billing data evaluation based on anonymized billing data
on the patient level (the GAP-DRG data set), including hospitali-
zation information on ICD-10, is realized; and (2) the second
strategy follows the drug prescription data at the single-patient
level throughout time. This strategy is realized exemplary for the
years 2006-2007, including information on medical treatment in
hospitals and services in extramural care; in addition, the pre-
scription data are analyzed regarding frequency and costs, includ-
ing the price per package.
Results: Because the infrastructure and coordination activities
are funded jointly by Inserm (the French National Institute of
Health and Medical Research), the French Directorate General for
Health, and the European Commission, orphanet is independent
from industry. In combination with GAP-DRG, a framework for
analyses (especially for orphan drug usage in Austria) is acquired.
Until the end of 2007, 40 orphan drugs get approval in Austria
from which 16 are used for cancer treatment directly. Fourteen
were not administered in 2006-2007; in total, 47,142 prescrip-
tions resulting in 56,375 packages of orphan drugs were adminis-
tered in 2006-2007. Thereby, the mean costs per prescription
were Euro1552, but the median was only Euro407. In addition, compari-
sons between the age of patients getting cancer therapy with
orphan drugs and other patients are realized.
Conclusions: Integration of support groups for specialization
could be one task to overcome imprecise information on stated ICD-10 diagnoses listed in orphanet projects or traditional lists of
coding orphan drugs. Especially, illnesses coded by a list of ICD-
10 codes-a mainly unique combination of codes-could be the
next step of integration for identification. Enhancements of ICD-
10 codes could improve the better identically coding of orphan
diseases. In particular, cancer treatment seems to be given special
attention regarding orphan drug financing by national health
security institutions.