PARTICIPAIS T | AGE OF CHILD (YEARS) | CHILD'S DIAGNOSIS | AGE AT TRANSFER TO ADULT SERVICE (YEARS) | WAS TRANSITION "PLANNED"? | WAS TRANSITION "SUPPORTED"? | AGE AT START OF SELF-INFUSING (YEARS) | MOTIVATION | CONFIDENCE IN SELF- MANAGEMENT | ADHERENCE (SELF-REPORTED) |
---|---|---|---|---|---|---|---|---|---|
Pal | 24 | Severe B | Yes | Yes | <10 | N/A | Yes | Good | |
Pa2 | 19 | Severe A | 16/17 | - | Moderate | Poor - reliance on parents | |||
Pa3 | 14/17 | Severe A | |||||||
Pa4 | 21 | Mild A | Yes | N/A | Poor | Doctor-dependent | |||
Pa5 | 19 | Severe A | Yes | Yes | 8 | ||||
Pa6 | 19 | Mild vWD | N/A | - | None | Poor - reliance on parents |
PARTICIPANT | AGE (YEARS) | DIAGNOSIS OF SUBJECT | AGE AT TRANSFER TO ADULT SERVICE (YEARS) | WAS TRANSITION "PLANNED"? | WAS TRANSITION "SUPPORTED"? | TREATMENT | AGE AT START OF SELF- INFUSING | MOTIVATION | CONFIDENCE IN SELF- MANAGEMENT | ADHERENCE (SELF-REPORTED) |
---|---|---|---|---|---|---|---|---|---|---|
Severe A | 15 | Yes | Yes | Prophylaxis | 5 | "I didn't really like having other people doing my treatment" | Yes | Good (but relies on regularity of dosing every other day) | ||
Severe B | 18 | Prophylaxis | 6 | School trip; seen alone at clinic since age 16 | Yes | Mostly good | ||||
Severe A | 16/17 | Prophylaxis | 9 | School trip | Yes | Mostly good | ||||
Severe A | 17 | Prophylaxis | 11 | Yes | Good | |||||
Mild A | 18 | Yes | Yes | On demand | - | - | Poor | N/A | ||
Mild A | 17/18 | Yes | Yes | On demand | - | Seen alone at clinic since age 16 | Yes | N/A | ||
Mild A | 16 | Yes | Yes | On demand | - | - | On demand | N/A | ||
Severe A | 16 | Yes | Yes | Prophylaxis | 8 (port) | Seen alone at clinic since age 14 | Yes | Good | ||
Mild vWD | 15 | TXA | - | - | Yes | On demand | ||||
P10 | vWD | 18 | OCP and TXA | Infused by clinic nurse | - | Poor | Relies on mother | |||
P11 | Severe vWD | 18 | Yes | Yes | TXA | 9, taught by her nurse | Encouraged by nurse | Good | On demand | |
P12 | Severe vWD 2A | 14 | TXA on demand | Infused by clinic nurse | - | Poor | Relies on mother | |||
P13 | Mild vWD | 17 | OCP and TXA | N/A | - | Reasonable | N/A |