Table 1 Sample Characteristics
Participant Characteristics | Participant n (%) |
|---|---|
Total number of years of practice in nutrition services (n = 19 dietitians) | |
< 1 year | 2 (11%) |
1–2 years | 1 (5%) |
3–5 years | 2 (11%) |
6–10 years | 5 (26%) |
11–15 years | 4 (21%) |
> 16 years | 5 (26%) |
Working full-time (n = 19 dietitians) | 13 (68%) |
Working part-time | 6 (32%) |
Time dedicated to care of PAH deficiency patients (n = 19 dietitians) | |
All of my time | 3 (16%) |
Less than all of my time but at least half of my time | 7 (37%) |
Less than half of my time | 9 (47%) |
Centre Characteristics | Centre n (%) |
Number of PAH deficiency children actively followed at centre (n = 14 centres) | |
< 10 | 1 (7%) |
10–20 | 2 (14%) |
20–40 | 8 (57%) |
> 40 | 3 (22%) |
# PAH deficiency patients newly diagnosed each year (n = 14 centres) | |
2 or fewer | 12 (86%) |
3–5 | 2 (14%) |
PAH deficiency patient population treated at the centre (n = 14 centres) | |
Pediatric only (0–18 years) | 3 (21%) |
Pediatric and adult combined | 11 (79%) |
Centre’s health care team composition (n = 14 centres)a | |
Dietitian | 14 (100%) |
Physician | 13 (93%) |
Metabolic nurse | 9 (64%) |
Social worker | 7 (50%) |
Psychologist | 6 (43%) |
Clinical biochemist | 5 (36%) |
Genetic counselor | 4 (29%) |
Nurse-practitioner | 1 (7%) |
Units used: mg/dLb (n = 14 centres) | 2 (14%)b |
Units used: μmol/L | 12 (86%) |