A questionnaire with 78 questions concerning the situation of ankylosing sp
ondylitis (AS) sufferers in Germany was distributed to a representative 300
0 out of the more than 14000 patient members of the German AS society; 1614
patients (54%) responded. The age distribution of these patients roughly a
grees with that expected due to the distribution of the age at diagnosis an
d the age distribution of the German population. The group of patients more
than 65 years old is, however, under-represented.
It turned out that at least 28% of the patients responding do not suffer fr
om idiopathic AS but from other spondyloarthritis (spondylitic psoriasis, s
pondyloarthritis combined with Crohn's disease or ulcerative colitis).
The distribution of the age at disease onset agrees well with that publishe
d in 1984 by van der Linden et al.: For 4% of the patients, the age at appe
arance of the first spondylitic symptoms was less than 15 years, for 90% it
was 15-40 years and for the remaining 6% more than 40 years. The average a
ge at disease onset was 25.6 years. The spondyloarthritides do not differ s
ignificantly in the distribution of the age at the first spondylitic sympto
ms.
The distribution of the age at diagnosis did not differ significantly betwe
en male and female patients, in contrast to the findings by van der Linden
et al. in 1984. The average age at diagnosis was 34.3 and 35.3 years for ma
le and female patients, respectively. The resulting mean diagnosis delay fo
r male and female patients was 8.4 and 9.8 years, respectively. Whereas the
average diagnosis delay was still 15 years for patients with disease onset
in the 1950s, it was only 7 1/2 years for patients with disease onset in 1
975-79. It is not yet possible to predict if an average diagnosis delay les
s than 7 1/2 years results for patients with a disease onset later than 198
0, because the number of further diagnoses to be expected for patients with
disease onset in these years is not negligible.
Twenty-six percent of the patients (22% of the males, 34% of the females) h
ave relatives, likewise, suffering from AS. Whereas patients with familiar
AS experience their first spondylitic symptoms, in the average, 1 1/2 years
earlier than patients without relatives suffering from AS, the difference
is 5 years for patients suffering from spondyloarthritis combined with ulce
rative colitis.
Reports written for patients on other results: of the survey can be found i
n the newsletter "Bechterew-Brief" of the Deutsche Vereinigung Morbus Becht
erew.