Table 1.
The number of coding references for top themes for people with PKU aged ≤18 and ≥ 19 years with PKU.
| Theme ranking | Themes | Number (n) and % of coding references for each theme |
Total number (n) and % of coding references for each theme |
||||
|---|---|---|---|---|---|---|---|
| Respondents aged ≤18 years |
Respondents aged ≥19 years |
||||||
| n | % | n | % | n | % | ||
| 1 | PKU diet | 89 | 51 | 139 | 50 | 228 | 50 |
| 2 | Mental health, symptoms, effects and co-morbidities of PKU | 37 | 21 | 61 | 22 | 98 | 22 |
| 3 | Social isolation | 15 | 9 | 16 | 6 | 31 | 7 |
| 4 | Support and low awareness of PKU by health professionals | 6 | 3 | 24 | 9 | 30 | 7 |
| 5 | Quality of life impacted by PKU | 12 | 7 | 12 | 4 | 24 | 5 |
| 6 | Treatments | 7 | 4 | 11 | 4 | 18 | 4 |
| 7 | Pregnancy | 2 | 1 | 7 | 3 | 9 | 2 |
| 8 | Explanations of PKU to others | 3 | 2 | 6 | 2 | 9 | 2 |
| 9 | Blood tests | 2 | 1 | 3 | 1 | 5 | 1 |
| Total number of coding references | 173 | 279 | 452 | ||||