The parents/carers of outpatients attending the department for electroencephalogram (EEG) recordings receive an information pack in advance of the appointment.
This includes advice about parental/carer consent which will be requested at the time of EEG investigation. For inpatients, relevant consent is sought at the time of the test, depending on the nature of the investigation.
Parents are entirely free to withhold consent for video recording or activation procedures, in which case a routine EEG will be performed without these components. They are informed that this may, however, provide less complete information about their child to the referring clinician.
In some instances, such as in video-EEG telemetry, the test may not be able to be carried out if consent is witheld, since the point of the investigation is usually to correlate behavioural changes with the EEG.
Consent is requested for video recording of the child during EEG with retention of video samples for clinical purposes and, if the parents consent, for teaching purposes. For children in the intensive care units and other acutely ill inpatients, the clinical staff on the unit will usually obtain consent for video from the child’s parents.
There are three possible levels of consent and the parent/carer is asked to select one.
- Clinical Management. Video taken during the EEG is used solely for understanding and treating their condition.
- Specialist hospital teaching. Great Ormond Street Hospital trains health professionals in the diagnosis and management of children's problems. Consenting to this option allows not only clinical management as above, but permits the video clips to be used to teach those who work in this hospital or attend for teaching.
- Wider publication. This allows use of the video for teaching of health professionals outside the hospital (in addition to the purposes outlined in 1 and 2). This might include incorporation into an electronic form such as a CD-ROM or (rarely) on a web-based information system. The department would contact parents/carers if members of staff wish to present the material at professional meetings.
At the end of the recording, the physiologist carrying out the test will usually select relevant portions of the video recording for review. The remainder of the video recording is deleted.
'Activation procedures': overbreathing and photic stimulation
Parents are also advised that activation procedures (hyperventilation, photic stimulation) will usually form part of the EEG investigation and that these carry a small risk of provoking a seizure.
The risk is estimated to be <1 in 1000.
They will be asked to sign a consent form for these procedures when they come for the test. They are also advised that the risk of photic stimulation provoking a seizure will also potentially apply to others present in the room (parents themselves, siblings, etc) and that they should leave the room if they are known to be affected by stroboscopic light or are concerned about this.
Induced sleep and sleep deprivation
Sleep-deprived EEGs also carry a small risk of provoking a seizure (again estimated at <1 in 1000).
Clinicians discuss this risk with the parents in the outpatient clinic at the time of consultation when it is decided to refer for a sleep-deprived EEG. There is a check box on the EEG request form to indicate that this has been done.
The parents/carers are then sent more information about the various methods of obtaining a sleep recording, together with a form on which they indicate their preference and sign their consent to the procedure.
An appointment for a sleep EEG cannot be made until this consent form has been received by the Department of Clinical Neurophysiology.