Table 2 Survey results
Frequencies (%) | |
|---|---|
Treating patients with or suspected of having rare diseases | |
Yes | 82.7 |
No | 17.3 |
Number of patients with or suspected to have rare diseases per year | |
< 1 | 2.9 |
1–4 | 61.5 |
5–9 | 21.5 |
10+ | 8.8 |
No information | 5.4 |
Percentage of own patients referred to a center for rare diseases | |
0 | 44.4 |
< 50% | 20.5 |
≥ 50 to < 100% years | 7.3 |
100% | 26.3 |
No information | 1.5 |
If patients with rare diseases have been treated, the diagnosis was made by whom? (multiple answers possible) | |
Own medical practice | 28.3 |
Specialist colleagues | 23.4 |
Hospital without center for rare diseases | 31.2 |
Hospital with center for rare diseases | 8.8 |
University hospital | 41.5 |
Center for rare diseases | 2.4 |
Don’t know | 8.8 |
Sources used for information on rare diseases (multiple answers possible) | |
Internet search engines | 61.7 |
Textbook/journals | 52.0 |
Special consultation hours at clinics | 41.9 |
Personal contact with clinician | 26.6 |
Orphanet (european information system for rare diseases) | 15.3 |
Center for rare diseases | 12.9 |
Self-help groups | 5.2 |
Se-atlas (electronic platform of information) | 1.2 |
Achse e.V. (umbrella organisation of self help groups) | 0.8 |
Other | 3.6 |
Confidence in dealing with patients | |
Rather safe/very safe | 12.1 |
Neither safe/unsafe | 37.1 |
Rather unsafe/very unsafe | 46.8 |
No information | 4.0 |
Desired support in care (multiple answers possible) | |
Contact person for specific rare diseases | 73.8 |
Co-care of the patients | 73.8 |
Support for diagnosis | 64.5 |
Provision of general information | 43.1 |
Information on clinical trials | 15.7 |
None | 1.2 |
Other | 0.8 |
Is the diagnostic process accelerated by center for rare diseases? | |
Probable/definitely | 70.2 |
Partly | 7.3 |
Definitely not/unlikely | 5.2 |
Don't know | 14.5 |
No information | 2.8 |
What is one's role in the care of patients with rare diseases? (multiple answers possible) | |
Co-carer | 73.3 |
Coordinator | 69.4 |
Stakeholder of the patients with rare diseases | 31.0 |
Referring physician | 27.4 |
None | 0.4 |
Other | 0.4 |