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Health-related quality of life (HRQoL) in cystine compared with non-cystine stone formers.
[cystinuria]
Cystinuria
is
a
genetic
cause
of
recurrent
kidney
stones
which
may
be
more
recurrent
and
larger
than
more
common
non-cystine
stones
.
They
may
have
a
greater
impact
on
health-related
quality
of
life
(
HRQoL
)
.
We
measured
this
impact
by
surveying
HRQoL
in
patients
with
stones
,
comparing
non-cystine
stone
formers
(
NCSF
)
to
cystine
stone
formers
(
CYSF
)
and
both
groups
to
normative
values
of
the
US
population
.
We
used
SF-
36
v
2
via
an
internet
instrument
.
CYSF
patients
were
recruited
via
cystinuria
-related
websites
,
two
patient
advocacy
groups
,
and
an
active
endourology
practice
.
NCSF
patients
were
recruited
from
the
same
practice
and
by
email
.
Total
n
surveyed
with
scorable
data
:
214
CYSF
and
81
NCSF
.
The
participants
included
128
men
and
161
women
.
The
group
of
CYSF
were
significantly
younger
(
39
vs
.
54
years
)
and
suffered
longer
from
kidney
stones
(
255
vs
.
136
months
)
.
CYSF
patients
had
significantly
more
episodes
of
stones
than
NCSF
patients
in
the
last
year
(
N
=
108
CYSF
,
N
=
20
NCSF
)
.
More
frequent
stones
in
the
last
year
and
mental
comorbidities
most
often
predicted
worse
scores
in
the
individual
HRQoL
domains
.
However
,
cystine
stone
composition
was
a
significant
predictor
of
worse
scores
only
for
role
emotional
.
Better
scores
in
all
SF-
36
domains
were
associated
with
greater
time
since
the
last
kidney
stone
event
.
Although
kidney
stones
are
often
transient
,
kidney
stone
formers
,
regardless
of
stone
composition
,
have
a
worse
HRQoL
than
the
standard
US
population
,
which
has
a
normative
score
of
50
,
such
as
general
health
(
41
.
2
±
12
.
8
)
,
bodily
pain
(
46
.
5
±
11
.
8
)
and
mental
health
(
45
.
1
±
12
.
6
)
.
CYSF
are
more
frequent
and
severe
stone
formers
compared
with
NCSF
with
a
resulting
greater
,
direct
impact
on
the
HRQoL
of
CYSF
patients
.
Whether
preventive
strategies
for
cystinuria
are
being
properly
utilized
by
practitioners
,
and
which
strategies
are
most
effective
,
should
be
established
.
Diseases
Validation
Diseases presenting
"mental comorbidities most often predicted worse scores in the individual hrqol domains"
symptom
cystinuria
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