Patient organisation comments

Advice

Key benefits for patients identified by patient organisations included the ability to record seizures in the natural environment, without the need to be admitted to hospital. This can capture long-term data, increasing the likelihood of recording a seizure and potentially helping identify patterns of when seizures happen. One organisation highlighted that the device could improve understanding of the correlation between subjective reports and actual seizures, moving towards improved clinical management. One organisation reported that the device is understood to be well accepted.

Patient organisations noted that those who could particularly benefit from the system were those who remain in education, to reduce disruption through their care. Also, those who have limited access to healthcare through location and transport as subsequent appointment burden is reduced. One organisation advised that those individuals whose seizures vary would particularly benefit. Another organisation highlighted that people who find keeping accurate seizure diaries a challenge could particularly benefit from the technology. This may include individuals with memory difficulties or a learning disability.

Both organisations reported possible challenges of the technology, including that it may be more painful with increased side effects, including risk of infection. One organisation advised that it may not suit people who appreciate the engagement of regular clinician feedback. One organisation highlighted that the limited overlying cortical area being recorded may miss the 'area of interest', resulting in not providing sufficient data.

Organisations highlighted that some groups may need special consideration for this device. This includes individuals with challenging behaviour (autism or a learning difficulty), which may need significant parent or carer support to optimise device use for an extended time period with the intervention, particularly if they have head sensitivities. Older people and people with physical disabilities may have issues reattaching the device.

One organisation reported that neurophysiology does not currently have adequate automated algorithms for data analysis and they felt investment in artificial intelligence is needed in the long term to support the demand in the field.