Table 3 Key barriers to effective transition from paediatric to adult services and management in adulthood
From: Optimising care and follow-up of adults with achondroplasia
Question n, % | HCP (n = 15*) | PAG (n = 10*) |
|---|---|---|
There is no MDT service available for adults | 11 (73) | 6 (60) |
Adult MDT services are not as experienced in achondroplasia management as the paediatric MDT | 10 (67) | 6 (60) |
Lack of interest/resistance from the individual with achondroplasia to access care | 8 (53) | 8 (80) |
Individuals are lost to follow up at the point of transition to adult services | 7 (47) | 6 (60) |
The transition processes are unclear and challenging | 6 (40) | 4 (40) |
Fewer needs for care | 4 (27) | 3 (30) |
Poor communication between healthcare services | 4 (27) | 3 (30) |
Travel distance to the centre | 2 (13) | 3 (30) |
Lack of trust/relationship with new physician or team | 1 (7) | 1 (10) |
Individuals are lost to follow up in paediatric services | 1 (7) | 2 (20) |
Lack of preparation for attending adult hospital without parents | 1 (7) | 2 (20) |
Poor communication between the individual with achondroplasia (or family) and the MDT | 0 | 0 |
Other | 2 (20) |