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The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the Family Dermatology Life Quality Index.
[dystrophic epidermolysis bullosa]
Severe
skin
diseases
,
such
as
epidermolysis
bullosa
(
EB
)
,
may
have
a
strong
impact
not
only
on
patients
but
also
on
caregivers
.
A
specific
questionnaire
evaluating
the
family
impact
of
dermatological
conditions
has
been
created
,
the
Family
Dermatology
Life
Quality
Index
(
FDLQI
)
,
but
it
has
not
yet
been
translated
in
Italian
and
validated
.
To
evaluate
the
burden
of
recessive
dystrophic
EB
on
family
caregivers
,
using
for
the
first
time
the
Italian
version
of
the
FDLQI
,
and
to
validate
the
instrument
.
Patients
with
recessive
dystrophic
EB
participated
in
a
postal
survey
enquiring
about
the
burden
of
EB
on
family
caregivers
.
They
completed
the
Family
Strain
Questionnaire
and
the
FDLQI
and
they
marked
on
a
silhouette
of
the
human
body
the
skin
lesion
distribution
.
Data
on
62
family
caregivers
were
collected
.
The
overall
mean
FDLQI
score
was
9
.
8
.
The
most
frequently
reported
problems
were
the
time
spent
on
looking
after
the
patient
,
emotional
distress
,
physical
well-being
,
and
increased
household
expenditure
.
FDLQI
scores
were
higher
in
family
caregivers
of
patients
between
10
and
20
years
.
The
Italian
FDLQI
showed
high
internal
consistency
,
construct
and
convergent
validity
.
Factor
analysis
revealed
the
presence
of
one
factor
structure
underlying
the
items
of
the
FDLQI
,
which
explained
51
.
5
%
of
the
total
variance
,
very
similar
to
the
original
questionnaire
(
55
.
8
%
)
.
The
Italian
version
of
the
FDLQI
seems
to
be
a
useful
tool
to
evaluate
the
impact
of
EB
on
family
caregivers
.
Further
studies
are
necessary
to
test
this
instrument
in
other
dermatological
conditions
.
Diseases
Validation
Diseases presenting
"specific questionnaire"
symptom
cutaneous mastocytosis
dystrophic epidermolysis bullosa
fabry disease
lamellar ichthyosis
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