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Utilization of health care services and satisfaction with care in adults affected by disorders of sex development (DSD).
[congenital adrenal hyperplasia]
Disorders
of
sex
development
(
DSD
)
are
a
heterogeneous
group
of
rare
genetic
disorders
of
sex
determination
or
differentiation
.
Evidence-based
guidelines
concerning
gender
assignment
and
surgical
and
hormonal
treatment
are
limited
for
many
DSD
entities
,
and
health
care
is
highly
fragmented
across
various
sub-specialties
and
settings
.
A
lack
of
informed
consent
,
secrecy
about
the
condition
,
shame
,
and
impaired
sexual
and
psychosocial
functioning
may
affect
satisfaction
with
care
.
The
main
goal
of
this
study
was
to
describe
satisfaction
with
care
in
individuals
with
DSD
and
to
identify
factors
associated
with
low
satisfaction
with
care
.
METHODS
/
MAIN
MEASURES
:
Using
both
biological
(
chromosomes
)
and
social
categories
(
sex
of
rearing
)
,
we
classified
participants
according
to
the
nomenclature
of
the
European
Society
for
Pediatric
Endocrinology
/
Lawson
Wilkins
Pediatric
Endocrine
Society
(
ESPE
/
LWPES
)
consensus
statement
.
We
used
standardized
measures
to
assess
satisfaction
with
care
(
CSQ-
8
)
,
health-related
quality
of
life
(
SF-
36
)
,
psychological
symptoms
(
BSI
)
,
and
gender
identity
(
FGI
)
,
in
addition
to
self-constructed
questionnaires
probing
experiences
with
health
care
and
access
to
self-help
groups
.
A
total
of
110
adults
were
recruited
between
January
2005
and
December
2007
in
four
study
centers
in
Germany
,
Austria
,
and
German
-speaking
Switzerland
.
Reports
of
half
the
participants
scored
below
the
cut-off
indicating
low
quality
of
care
.
Women
with
XX
DSD
conditions
and
virilization
(
i
.
e
.
,
congenital
adrenal
hyperplasia
)
reported
the
highest
scores
for
satisfaction
with
care
,
and
women
with
XY
DSD
conditions
and
complete
lack
of
androgen
effects
reported
the
lowest
scores
.
Satisfaction
with
care
was
positively
associated
with
indicators
of
psychological
well-being
.
Satisfaction
with
care
is
lowest
among
participants
with
the
rarest
conditions
,
highlighting
the
lack
of
evidence-based
recommendations
and
the
lack
of
coordination
of
care
.
Associations
of
satisfaction
and
well-being
indicate
the
need
to
ensure
access
to
mental
health
services
.
Diseases
Validation
Diseases presenting
"complete lack"
symptom
congenital adrenal hyperplasia
hodgkin lymphoma, classical
kindler syndrome
neonatal adrenoleukodystrophy
oculocutaneous albinism
omenn syndrome
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