Nutritional management of phenylalanine hydroxylase (PAH) deficiency in pediatric patients in Canada: a survey of dietitians’ current practices

Table 4 Clinic visits and communication

	At least once per week	Less than once per week but at least once per month	Less than once per month but at least once per year	Less than once per year	Other	GMDI guideline^a
					n (%)	GMDI guideline^a
						n (%)
				n (%)
	n (%)
	n (%)	n (%)	n (%)
Reported frequency of clinic visits^b
< 1 year of age	3 (17)	6 (33)	8 (44)	0	1 (6)	weekly to monthly
1–2 years of age	0	4 (22)	14 (78)	0	0	monthly to every 6 months
3–10 years of age	0	2 (11)	16 (89)	0	0	monthly to every 6 months
11–18 years of age	0	2 (11)	16 (89)	0	0	each 6–12 months
Reported frequency of communication with patients/family^c
< 1 year of age	15 (79)	3 (16)	0	0	1 (5)^d	1–2 times per week
1–2 years of age	4 (22) ^b	13 (72) ^b	0	0	1 (6)^b,e	once per week to once per month
3–10 years of age	0	13 (69)	5 (26)	0	1 (5)^e
11–18 years of age	0	9 (47)	9 (47)	0	1 (6)^f

^aGMDI recommendations are based on the following age groups: 0–1 year, 1–7 years; 8–18 years
^bOne missing response (n = 18)
^cvia phone, email, fax, and other means of communication outside of the clinic visit
^d“Each month until 3 months old then every 3 months”
^e“Based on how frequently family/patients monitor Phe levels. Some [monitor] weekly, some [monitor] every 2 weeks, some [monitor] monthly”
^f“Blood work is supposed to be done monthly; if they do it, I will connect with them”

ISSN: 1750-1172