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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)
  1. n1: all retrospectively analysed patients
  2. n2: patients with available data
  3. n.a. not applicable
  4. aincludes late diagnosed PKU patients with special school education and patients still in education
  5. bdata available only for the participants of the survey (n = 30)
  6. cin total three patients, two of them are still trainees