Table 12 Sleep and rest in CLN2 disease, statements and consensus data
Statement | Responders | Evidence level | Consensus |
|---|---|---|---|
Insomnia and sleep disturbance are common, and this should be actively monitored and managed as per local practice. Fixed cushions for positioning are recommended to avoid motor restlessness, the risk of swallowing saliva and fear of choking | 39 | C | 90 |
Maintaining proper sleep is vitally important for the patient and the caregivers; therefore it is important to ensure good and sufficient sleep for the whole family | 41 | C | 95 |
A patient should be supported as required to continue to engage and socialise at school or other facilities for as long as possible | 41 | D | 96 |
Living with a rare disease is challenging to the whole family and appropriate support should be offered to caregivers, siblings and family members | 40 | D | 97 |