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Pre-inpatient evaluation on quality and impact of care in systemic mastocytosis and the influence of hospital stay periods from the perspective of patients: a pilot study.
[cutaneous mastocytosis]
The
quality
and
impact
of
care
in
patients
with
mastocytosis
has
not
yet
been
investigated
in
detail
.
Here
,
we
report
monocentric
findings
of
a
retrospective
questionnaire
from
84
adult
inpatients
with
mastocytosis
regarding
the
quality
and
impact
of
pre-inpatient
clinical
care
after
a
period
of
inpatient
stay
.
It
was
possible
to
analyse
the
data
derived
from
50
patients
(
40
female
,
10
male
;
74
%
with
systemic
mastocytosis
,
26
%
with
cutaneous
mastocytosis
)
.
Correct
diagnoses
were
discovered
to
have
taken
over
2
years
for
68
%
of
patients
(
up
to
11
years
)
.
58
%
of
patients
required
the
consultation
of
three
or
more
clinicians
until
the
final
diagnosis
was
reached
;
3
patients
consulted
more
than
9
doctors
.
The
correct
diagnosis
was
finally
made
in
94
%
of
patients
by
a
dermatologist
.
The
main
symptoms
expressed
by
the
patients
were
skin
disorders
(
92
%
)
,
itching
(
66
%
)
and
exhaustion
(
48
%
)
.
From
a
patient
perspective
,
the
main
triggering
factors
given
were
food
and
food
additives
(
63
%
)
,
emotional
stress
(
46
%
)
and
physical
exertion
(
44
%
)
.
Interdisciplinary
inpatient
treatment
provided
the
patients
with
a
better
understanding
of
their
disease
in
90
%
.
Outpatient
supervision
was
performed
mainly
by
dermatologists
(
46
%
)
,
family
doctors
(
40
%
)
and
other
clinicians
(
14
%
)
.
22
%
required
the
assistance
of
various
doctors
for
their
outpatient
care
.
Only
14
%
of
patients
reported
that
their
daily
life
was
relatively
unaffected
by
mastocytosis
.
22
%
felt
the
disease
slightly
affected
their
quality
of
life
,
20
%
moderately
,
26
%
strongly
and
18
%
said
the
disease
had
a
very
strong
impact
on
their
quality
of
life
.
82
%
of
patients
browsed
the
Internet
in
order
to
find
information
regarding
mastocytosis
,
although
for
26
%
this
information
was
not
deemed
useful
and
10
%
felt
rather
unsettled
.
Patients
with
severe
mastocytosis
requiring
hospitalization
reported
clear
restrictions
in
their
daily
life
.
Such
patients
require
an
improved
interdisciplinary
diagnostic
approach
and
therapy
.
Diseases
Validation
Diseases presenting
"although for 26"
symptom
cutaneous mastocytosis
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