Table 4.

Summary of follow-up practices (N = 31)

Question and answers by category						Median (range)
Does your centre follow a specific follow-up protocol for PKU patients?						N/A
Yes		No		No answer
77.4 %		19.4 %		3.2 %
Where does your centre collect samples for monitoring Phe levels in treated PKU patients?a						N/A
Home	Outpatient clinic	Hospital		Family doctor clinic (general practitioner)
74.2 %	67.7 %	35.5 %		29.0 %
What is the average return time of routine Phe control results to your patients, after blood sampling?						N/A
1–2 days	3–4 days	5–6 days	7–8 days	No answer
25.8 %	35.5 %	16.1 %	19.4 %	3.2 %
What proportion of your patients is lost to follow-up (defined as patient was not seen for two years)?						10 (0–21)
0 %	1–5 %	6–10 %	11–20 %	≥21 %	No answer
9.7 %	22.6 %	22.6 %	25.8 %	3.2 %	16.1 %

N/A not applicable, Phe phenylalanine, PKU phenylketonuria

^aMultiple answers were possible, and therefore, the total exceeds 100 %