| |
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 guidelinea
|
|---|
|
n (%)
|
|---|
|
n (%)
|
|---|
|
n (%)
|
|---|
|
n (%)
|
|---|
|
n (%)
|
n (%)
|
|---|
|
Reported frequency of clinic visitsb
|
|
< 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
|
|
11–18 years of age
|
0
|
2 (11)
|
16 (89)
|
0
|
0
|
each 6–12 months
|
|
Reported frequency of communication with patients/familyc
|
|
< 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”
