Quality‐of‐Life Measurement in Epidermolysis Bullosa. Position Statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient‐Oriented Outcomes and External Experts
International Journal of Dermatology,
Journal Year:
2025,
Volume and Issue:
unknown
Published: Jan. 29, 2025
In
this
paper,
the
European
Academy
of
Dermatology
and
Venereology
(EADV)
Task
Force
on
Quality
Life
(QoL)
Patient-Oriented
Outcomes
presents
its
position
statements
health-related
(HR)
QoL
assessment
in
epidermolysis
bullosa
(EB).
The
EADV
TF
recommends
use
EB-specific
instrument
QOLEB
patients
over
age
10
years
and,
addition
to
QOLEB,
iscorEB-p
moderate-to-severe
EB;
IntoDermQoL
proxy
with
module
should
be
used
children
aged
under
5
years.
iscorEB-p,
dermatology-specific
CDLQI
may
measure
HRQoL
EB
from
Dermatology-specific
and/or
generic
instruments
compare
impact
other
diseases;
family
studied
using
EB-BoD,
measures,
instruments.
Language: Английский
Quality of life measurement in assessing treatment effectiveness in urticaria: European experts position statement
International Journal of Dermatology,
Journal Year:
2024,
Volume and Issue:
63(12), P. 1657 - 1667
Published: July 4, 2024
In
this
study,
the
European
Academy
of
Dermatology
and
Venereology
(EADV)
Task
Forces
on
Quality
Life
Patient-Oriented
Outcomes
Urticaria
Angioedema
has
examined
Health-Related
(HRQoL)
measurement
in
treatment
urticaria.
The
Index
was
most
frequently
used
HRQoL
instrument
clinical
trials
Many
reports
urticaria
gave
no
exact
numeric
results
related
to
changes,
making
clear
conclusions
comparisons
with
other
studies
impossible.
interpretation
impairment
data
is
more
difficult
when
assessed
by
instruments
without
severity
stratification
systems.
minimal
clinically
significant
difference
(MCID)
a
oriented
relevant
parameter
than
depending
statistically
changes
scores.
Therefore,
using
established
MCID
practice
preferred.
Language: Английский