Table 2 Sociodemographic data and metabolic control of the investigated adult PKU cohort as well as for subgroups (group A = late diagnosed patients; group B = early diagnosed + therapy interruption ≥ 4 years during childhood/adolescence; group C = early diagnosed and continuously treated) compared to the reference population of German federal state of Saxony [18, 19]. Graduations: modern certificate (i.e. at the age of 15 years; after 9 years of school), secondary school certificate (i.e. at the age of 16 years; after 10 years of school), high school diploma (i.e. at the age of 18–19 years; after 12–13 years of school). The number of PKU patients per characteristic varies, as not all data of all patients were available
From: Ten years of specialized adult care for phenylketonuria – a single-centre experience
PKU patients total (n = 96) | Group A (n1 = 8) | Group B (n1 = 29) | Group C (n1 = 59) | Population of Saxony 2014 | |
|---|---|---|---|---|---|
Current median age (range) in years | 32 (18–62) | 32 (19–62) | 39 (34–46) | 30 (18–44) | n.a. |
Number currently on/off diet (n) | 76/20 | 6/2 | 21/8 | 49/10 | n.a. |
Graduation | n2 = 90 | n2 = 7 | n2 = 28 | n2 = 55 | |
no graduation/special education [%] | 14.5a | 85.7 | 10.7 | 3.6 | 8.7 |
secondary modern school certificate [%] | 18.9 | 14.3 | 28.6 | 18.2 | 9.9 |
secondary school certificate [%] | 43.3 | 0.0 | 50.0 | 45.5 | 52.0 |
high school diploma [%] | 23.3 | 0.0 | 10.7 | 32.7 | 29.4 |
Educational attainment | n2 = 85 | n2 = 7 | n2 = 28 | n2 = 51 | |
Apprenticeship [%] | 77.6 | 14.3 | 89.3 | 76.5 | 77.2 |
University degree [%] | 12.9 | 0.0 | 7.1 | 17.6 | 14.5 |
Without [%] | 10.6a | 85.7 | 3.6 | 5.9c | 8.3 |
Net income (per month) | n2 = 24b | n.a. | n2 = 8b | n2 = 16b | |
<700€ | 20.8 | 12.5 | 25.0 | 13.0 | |
700€–1500€ | 50.0 | 62.5 | 43.8 | 53.5 | |
>1500€ | 29.2 | 25.0 | 31.2 | 33.5 | |
Parenthood [%] | n2 = 78 | n2=80.0 | n2 = 23 | n2 = 48 | 41.0 |
41.0 | 56.5 | 39.6 | |||
Metabolic control | |||||
Median (range) dried blood Phe concentration during the 6th year of life [μmol/l] | n2 = 74 | n2 = 3 | n2 = 23 | n2 = 48 | n.a. |
307.3 (92.1–1246.6) | 203.9 (192.9–289.7) | 447.0 (107.9–1246.6) | 263.6 (92.1–901.9) | ||
Median (range) dried blood Phe concentration during the 18th year of life [μmol/l] | n2 = 71 | n2 = 4 | n2 = 19 | n2 = 48 | n.a. |
587.4 (52.5–1454.6) | 650.2 (434.8–1247.0) | 622.3 (169.7–1454.6) | 562.6 (52.5–1186.6) | ||
Current median (range) dried blood Phe concentration (last three values) [μmol/l] | n2 = 96 | n2 = 8 | n2 = 29 | n2 = 59 | n.a. |
658.7 (109.1–1458.5) | 617.9 (323.4–1209.7) | 789.0 (109.1–1458.5) | 596.2 (168.1–1365.2) | ||