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A questionnaire survey on the usage of low protein staple foods by people with phenylketonuria in Scotland.
[phenylketonuria]
There
is
scarce
evidence
available
with
respect
to
an
evaluation
of
the
role
of
low
protein
staple
foods
(
LPSF
)
in
the
management
of
phenylketonuria
(
PKU
)
.
The
present
study
explored
beliefs
,
acceptability
and
issues
around
the
use
of
LPSF
by
people
with
PKU
or
their
carers
.
A
semi-anonymous
questionnaire
was
posted
to
178
people
with
PKU
in
Scotland
(
104
children
,
aged
2
-
17
Â
years
,
and
74
adults
)
.
Questions
explored
were
:
the
type
and
amount
of
LPSF
ordered
;
perceptions
on
use
and
usefulness
of
LPSF
;
acceptability
of
the
LPSF
sensory
properties
(
i
.
e
.
taste
,
smell
,
texture
,
appearance
)
;
support
for
the
supply
and
use
of
LPSF
;
and
comments
from
primary
healthcare
professionals
regarding
dispensing
and
prescription
.
Eighty
-
two
individuals
responded
(
46
%
response
rate
)
:
97
%
perceived
that
LPSF
were
useful
for
PKU
management
;
more
than
85
%
reported
that
LPSF
were
important
for
phenylalanine
control
,
satisfying
appetite
,
and
diet
variety
.
The
most
common
LPSF
ordered
were
pasta
/
rice
/
cous
cous
,
flour
,
biscuits
and
bread
.
Fifty
percent
of
respondents
ordered
<
51
%
of
the
recommended
unit
allowance
of
LPSF
.
The
sensory
properties
of
LPSF
were
well
perceived
.
Forty
-
nine
percent
(
n
Â
=
Â
39
)
had
received
a
comment
from
primary
healthcare
staff
regarding
the
prescription
or
dispensing
of
LPSF
;
59
%
(
n
Â
=
Â
23
)
received
negative
comments
,
the
majority
of
which
came
within
general
practitioner
surgeries
.
There
is
a
positive
attitude
and
perception
on
the
use
and
usefulness
of
LPSF
in
the
management
of
PKU
.
Issues
with
respect
to
the
supply
and
provision
of
LPSF
within
primary
health
care
may
indicate
poor
communication
between
specialists
and
primary
healthcare
professionals
or
a
lack
of
scientific
evidence
demonstrating
their
clinical
effectiveness
.
Diseases
Validation
Diseases presenting
"primary healthcare professionals"
symptom
phenylketonuria
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