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% |