Table 2 Information on PKU patients’ follow-up
From: Phenylketonuria from the perspectives of patients in Türkiye
Pediatric | Adolescent | Adult | ||||
|---|---|---|---|---|---|---|
N | n (%) | N | n (%) | N | n (%) | |
Frequency of measuring blood phenylalanine concentration | 66 | 43 | 71 | |||
Once in a year | - | 2 (4.7) | 20 (28.2) | |||
Every six months | 5 (7.6) | 6 (14.0) | 6 (8.5) | |||
Every three months | 12 (18.2) | 7 (16.3) | 10 (14.1) | |||
Once in a month | 15 (22.7) | 20 (46.5) | 24 (33.8) | |||
Twice in a month | 32 (48.5) | 6 (14.0) | 4 (5.6) | |||
Other | 2 (3.0) | 2 (4.7) | 7 (9.9) | |||
Number of follow-ups at metabolism center in the last year | 55 | n (%) | 31 | n (%) | 43 | n (%) |
1 | 27 (49.1) | 12 (38.7) | 32 (74.4) | |||
2 | 19 (34.5) | 15 (48.4) | 6 (14.0) | |||
3 | 5 (9.1) | 2 (6.5) | 3 (7.0) | |||
≥ 4 | 4 (7.3) | 2 (6.5) | 2 (4.7) | |||
Service received at the metabolism center * | 66 | n (%) | 44 | n (%) | 72 | n (%) |
Measurement of serum phenylalanine concentration | 64 (97.0) | 41 (93.2) | 70 (97.2) | |||
Recommendations for low-protein diet and diet calculation | 47 (71.2) | 31 (70.5) | 61 (84.7) | |||
Dose adjustment for medical therapy | 40 (60.6) | 27 (61.4) | 51 (70.8) | |||
Other laboratory tests | 34 (51.5) | 30 (68.2) | 59 (81.9) | |||
Support from Pedagogue/Psychologist | 2 (3.0) | 7 (15.9) | 6 (8.3) | |||
n (%) | n (%) | n (%) | ||||
Regular visits for dietician control | 66 | 59 (89.4) | 44 | 33 (75.0) | 72 | 56 (77.8) |
Receiving support from Pedagogue/Psychologist | 66 | 15 (22.7) | 44 | 29 (65.9) | 72 | 27 (37.5) |
Mean ± SD Median (min-max) | Mean ± SD Median (min-max) | Mean ± SD Median (min-max) | ||||
The last measured serum phenylalanine level, µmol/L** | 33 | 347.12 ± 194.75 290 (100–840) | 27 | 603.26 ± 558.52 425 (110–3000) | 49 | 745.00 ± 315.00 750 (90-1694) |