Skip to main content

Table 3 Psychological burden of low protein diet, and intake of amino acid mixtures and medication

From: Homocystinuria patient and caregiver survey: experiences of diagnosis and patient satisfaction

 

Never

Yes

A little of the time

Sometimes

Most of the time

Always

In the past seven days did you/was it…

Argue with your child about intake of amino acid mixture? (n = 47)*

13

34

6

14

4

3

28%

72%

18%

41%

12%

9%

Hard to take amino acids? (n = 48)

13

35

14

13

4

4

27%

73%

   

11%

Hard to engage in activities due to intake of amino acid mixture? (n = 58)

28

30

12

12

4

2

48%

52%

40%

40%

13%

7%

Argue with your child about low protein diet? (n = 39)

17

22

11

11

44%

56%

50%

50%

  

Hard to follow low protein diet? (n = 65)

12

53

18

22

10

3

19%

81%

34%

41%

19%

6%

Hard to engage in activities due to low protein diet? (n = 53)

23

30

16

9

5

43%

57%

53%

30%

 

17%

Did patient follow the low protein diet as directed? (n = 45)

1

44

2

9

33

2%

98%

4%

21%

 

75%

Feel unhappy about diet? (n = 61)

11

50

15

19

11

5

18%

82%

30%

38%

22%

10%

Enjoy eating when following diet? (n = 52)

1

51

8

9

34

2%

98%

16%

18%

 

66%

Want to eat what others eat? (n = 53)

11

42

8

17

17

21%

79%

19%

40.5%

 

40.5%

Preparing low-protein meals time consuming? (n = 48)

10

38

14

11

13

21%

79%

37%

29%

 

34%

Annoying/challenging to weigh or estimate protein content? (n = 49)

13

36

12

12

12

27%

73%

33.3%

33.3%

 

33.3%

Hard to take oral/parenteral medication? (n = 74)

43

31

11

13

7

58%

42%

35%

42%

 

23%

  1. *7 participants chose no category but explained verbally that there were arguments with the child about intake of the amino acid mixture