Transition experiences of parents of young people with bleeding disorders
| 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 | 16 | Yes | Yes | <10 | N/A | Yes | Good |
| Pa2 | 19 | Severe A | 18 | No | No | 16/17 | - | Moderate | Poor - reliance on parents |
| Pa3 | 14/17 | Severe A | 16 | No | No | ||||
| Pa4 | 21 | Mild A | 16 | Yes | No | N/A | Poor | Doctor-dependent | |
| Pa5 | 19 | Severe A | 16 | Yes | Yes | 8 | |||
| Pa6 | 19 | Mild vWD | 17 | No | No | N/A | - | None | Poor - reliance on parents |
Characteristics of people with bleeding disorders interviewed
| 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) |
|---|---|---|---|---|---|---|---|---|---|---|
| P1 | 20 | 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) |
| P2 | 21 | Severe B | 18 | No | No | Prophylaxis | 6 | School trip; seen alone at clinic since age 16 | Yes | Mostly good |
| P3 | 18 | Severe A | 16/17 | No | No | Prophylaxis | 9 | School trip | Yes | Mostly good |
| P4 | 17 | Severe A | 17 | No | No | Prophylaxis | 11 | Yes | Good | |
| P5 | 19 | Mild A | 18 | Yes | Yes | On demand | - | - | Poor | N/A |
| P6 | 21 | Mild A | 17/18 | Yes | Yes | On demand | - | Seen alone at clinic since age 16 | Yes | N/A |
| P7 | 21 | Mild A | 16 | Yes | Yes | On demand | - | - | On demand | N/A |
| P8 | 19 | Severe A | 16 | Yes | Yes | Prophylaxis | 8 (port) | Seen alone at clinic since age 14 | Yes | Good |
| P9 | 21 | Mild vWD | 15 | No | No | TXA | - | - | Yes | On demand |
| P10 | 21 | vWD | 18 | No | No | OCP and TXA | Infused by clinic nurse | - | Poor | Relies on mother |
| P11 | 20 | Severe vWD | 18 | Yes | Yes | TXA | 9, taught by her nurse | Encouraged by nurse | Good | On demand |
| P12 | 20 | Severe vWD 2A | 14 | No | No | TXA on demand | Infused by clinic nurse | - | Poor | Relies on mother |
| P13 | 19 | Mild vWD | 17 | No | No | OCP and TXA | N/A | - | Reasonable | N/A |