Table 2 Characteristics of the samples used in the analyses
|  | Child sample (N = 92) | Adolescent sample (N = 110) | Adult sample (N = 104) | Parent samplea (N = 253) | Young Children sampleb (N = 52) | |
|---|---|---|---|---|---|---|
Age (years) | n (missing) | 90 (2) | 110 (0) | 101 (3) | 244 (9) | 52 (0) |
Mean (SD) | 9.8 (0.8) | 14.5 (1.6) | 25.8 (6.6) | 41.6 (6.5) | 4.4 (2.5) | |
Min – Max | 9.0–11.0 | 12.0–17.0 | 18.0–45.0 | 24.0–66.0 | 0.0–8.0 | |
Gender | Male | 43 (46.7) | 56 (50.9) | 38 (36.5) | 69 (27.3) | 28 (53.8) |
n (%) | ||||||
| Â | Female | 47 (51.1) | 54 (49.1) | 66 (63.5) | 183 (72.3) | 24 (46.2) |
| Â | Missing | 2 (2.2) | 0 (0.0) | 0 (0.0) | 1 (0.4) | 0 (0.0) |
Treated with BH4 | n (%) | 27 (29.3) | 27 (24.5) | 15 (14.4) | – | 13 (25.0) |
PKU severity | Classicalc | 66 (71.7) | 75 (68.2) | 67(64.4) | – | 32 (61.5) |
n (%) | ||||||
Missing | 4 (4.3) | 2 (1.8) | 0 (0.0) | – | 0 (0.0) | |
Management | Medical only | 45 (48.9) | 49 (44.5) | 39 (37.5) | – | 21 (40.4) |
n (%) | ||||||
Multi-disciplinary team | 45 (48.9) | 61 (55.5) | 63 (60.6) | – | 31 (59.6) | |
Missing | 2 (2.2) | 0 (0.0) | 0 (0.0) | – | 0 (0.0) | |
Overall health status rating by clinician | Poor | 0 (0.0) | 0 (0.0) | 0 (0.0) | – | 0 (0.0) |
Fair | 2 (2.1) | 0 (0.0) | 3 (2.9) | – | 0 (0.0) | |
n (%) | ||||||
Good | 19 (20.7) | 38 (34.5) | 28 (26.9) | – | 7 (13.5) | |
Very good | 41 (44.6) | 42 (38.2) | 46 (44.2) | – | 18 (34.6) | |
Excellent | 28 (30.4) | 30 (27.3) | 26 (25.0) | – | 27 (51.9) | |
Missing | 2 (2.2) | 0 (0.0) | 1 (1.0) | – | 0 (0.0) | |
Country | France | 13 (14.1) | 10 (9.1) | 18 (17.3) | 33 (13.0) | 10 (19.2) |
n (%) | ||||||
Germany | 19 (20.7) | 20 (18.2) | 21 (20.2) | 46 (18.2) | 8 (15.4) | |
Italy | 15 (16.3) | 26 (23.6) | 22 (21.2) | 49 (19.4) | 8 (15.4) | |
Netherlands | 7 (7.6) | 10 (9.1) | 7 (6.7) | 23 (9.1) | 6 (11.5) | |
Spain | 20 (21.7) | 20 (18.2) | 21 (20.2) | 48 (19.0) | 8 (15.4) | |
Turkey | 14 (15.2) | 20 (18.2) | 8 (7.7) | 40 (15.8) | 6 (11.5) | |
UK | 4 (4.3) | 4 (3.6) | 7 (6.7) | 14 (5.5) | 6 (11.5) | |
Missing | 0 (0.0) | 0 (0.0) | 0 (0.0) | 0 (0.0) | 0 (0.0) | |