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Research Request — Epilepsy & Seizure Monitoring Systems

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Research Request — Epilepsy & Seizure Monitoring Systems

Brief

What are the types of AT seizure monitoring devices available? Is there the evidence of efficacy and seizure monitoring AT for epilepsy and seizure conditions, e.g. seizure mats, personally worn monitors and video/audio monitoring? If possible, please seek to identify if findings demonstrate any difference in which items are affective/ineffective or designed for children vs adults in their application. When we would choose a specific type of AT (likely to be determined by their treating physician)? Additional information regarding incidence of seizures in children vs adults — i.e. — if TAT are receiving requests to fund high cost AT monitoring for a child, what seizure conditions are likely to decrease or cease as child ages, and therefore unlikely to represent value for money? What are common known triggers for seizures? What are common seizure conditions? This may help advice with regard to other options that could be considered rather than monitoring when seizure occurs.

Date December 2019

Prepared for Julie _ {Assistant Director (TAT)}

Prepared by Craig ‘ > ‘(Tactical Research Advisor - TAT/AAT) Aanika| ——_— (Research Team Leader - TAT)

Cleared by

Contents

Related TAB Research … 3 Seizure Monitoring Systems/Devices … 3 General commonly known conditions and triggers of seizures … 3 Types of seizures … 4 Epileptic Seizures … 4 Non epileptic Seizures … 7 Febrile Seizures … 7 Infantile Spasms (West Syndrome) … 8 Pyridoxine-dependent seizures … 9 Evidence of seizure frequency depending on age of patient … 10 Types of seizure monitoring devices … 11 Mattresses/mats for beds … 11 Smart watches … 12

INTERNAL TAT USE ONLY Research Request — Epilepsy & Seizure Monitoring Systems | Page 1 of 30

Page 101 of 153

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  • Mobile phone applications (Apps) …:scesesesseeseseteeeteeeeaeenes ssnasevans’sbuctsenetessen sssansebeens’se inais cisuane és re a
  • Pendants …:13
  • Bracelet/Anklet …:13
  • Cameras …:13
  • Socks (Babies) …:13
  • Nappies (Babies))cicatccsrtcsissccccnce sassececotatocteaneancesas go peacareuacames sh sbeerateabsceabaaamdouatgecasapeacatvess acatoneetouncaeys 13
  • Oximeter ……… i dap ads ide cadakaha tga khcds Adis ecnsabads cevdevanteunees a ea and ala da bps dacs eaig ad talts dai bvcavadadandetahadeaiben 13
  • Device suitability depending on age of patient ………c:cccssecsscesssceeensesessensssaeeeeeseesseessuesecassecsaeensaeeneeess 13
  • Seizure Monitoring Products …:13
  • Evidence of efficacy of seizure monitoring devices …:14
  • Evidence of Efficacy …:15
  • Choosing a device type: guidance for physicians, families and researchers …:17
  • Future Research …:19
  • Evidence and efficacy of Seizure Alert Dogs …:19
  • NDIS Practice Guide – Epilepsy Reports …:20
  • Research Summary …:20
  • Reasonable & Necessary Supports …:21
  • Reference List …:22
  • Appendix A: NDIS Technical Advisory Team Survey …:24
  • Appendix B: NDIS Health Policy (Epilepsy monitoring through assistive technology) …:30

Please note:

The research and literature reviews collated by our TAT Research Team are not to be shared external to the Branch. These are for internal TAT use only and are intended to assist our advisors with their reasonable and necessary decision making. Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on access or planning matters they are to call the TAPS line for advice. The Research Team are unable to ensure that the information listed below provides an accurate & up-to-date snapshot of these matters.

INTERNAL TAT USE ONLY Research Request – Epilepsy & Seizure Monitoring Systems | Page 2 of 30 Page 102 of 153

Related TAB Research

NED20/191674 : RES HWB/AT Thermoregulation Dysfunction and Seizures

Seizure Monitoring Systems/Devices

A seizure alert device is a monitoring system that can detect when a person may be having a seizure and notify someone who can respond. Devices can be used by people of any age. Some systems also record and store seizure data that can be shared with your physician. Seizure alert devices do not prevent, diagnose or treat seizures or epilepsy.

“Currently, seizure tracking relies on subjective patient and family recall and may be influenced by the capacity to identify seizures, the level of awareness during the event, and the ability to remember details afterward… Seizure detection devices provide more accurate seizure quantification, allowing clinicians to tailor treatment more objectively. In addition, seizure prediction devices may alert when an upcoming seizure is going to occur and may enhance patient and family confidence and improving quality of life”.

General commonly known conditions and triggers of seizures

A seizure occurs when a burst of electrical impulses in the brain escape their normal limits. They spread to neighbouring areas and create an uncontrolled storm of electrical activity. The electrical impulses can be transmitted to the muscles, causing twitches or convulsions.

A seizure can cause changes in your behaviour, movements or feelings, and in levels of consciousness. If you have two or more seizures or a tendency to have recurrent seizures, you have epilepsy.

The cause for epilepsy in only understood in a minority of the cases. Typically, the known causes of seizure involve some injury to the brain. Some of the main causes of epilepsy include:

  • Low oxygen during birth
  • Head injuries that occur during birth or from accidents during youth or adulthood
  • Brain tumours
  • Genetic conditions that result in brain injury, such as tuberous sclerosis
  • Infections such as meningitis or encephalitis
  • Stroke or any other type of damage to the brain
  • Abnormal levels of substances such as sodium or blood sugar

  1. Epilepsy Foundation of America, Considering a seizure alert device, 2018 [online brochure], <https://www.epilepsy.com/sites/core/files/atoms/files/DAS100 Seizure Alert Devices 09-2018 FINAL2.pdf> (accessed 19 August 2019).

  2. A. Ulate-Campos et al.,

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In up to 70% of all cases of epilepsy in adults and children, no cause can be discovered.

Other common triggers:

  • Forgetting/unable to take medication (e.g., vomiting)
  • Sleep deprivation / fatigue
  • Emotional stress
  • Alcohol or drugs
  • Extreme temperatures, particularly heat or fever
  • Flashing lights (e.g., from video games, strobe lights), this is an uncommon trigger and only applies to a small proportion of people with epilepsy, typically those with a genetic epilepsy.

Types of seizures

The following seizure types are summarized below:

  • Epileptic Seizures
  • Non-epileptic Seizures
  • Febrile Seizures
  • Infantile Spasms (West Syndrome)
  • Pyridoxine-dependent seizures

Epileptic Seizures

Physicians look at the following three things when classifying an epileptic seizure:

  1. Where in the brain the seizure starts (e.g., the onset)
  2. If the person is aware or not during the seizure
  3. Whether the seizure involves movement.

Epileptic seizures can be divided into three major groups.

Below is a table indicating the types of epileptic seizures, together with the condition of the seizure (what the patient experiences and how they may present), and what might trigger the type of seizure.

In 2017, the International League Against Epilepsy revised its classification of seizures to make diagnosing and classifying seizures more accurate and easier. The classifications are used below.

Seizure Type Seizure Sub-Type Conditions Triggers/Causes
Focal Onset Focal aware The person is fully aware of what’s happening around them but may not The cause is often unknown.

WebMD,

Seizure Type Seizure Sub-Type Conditions Triggers/Causes
partial seizures, where the seizure starts in just one small region of the brain. It may spread to other areas of the brain. Formerly known as simple partial seizures be able to talk or respond. They are usually brief, and are often called a warning or ‘aura’ (that a more significant seizure may develop) but are actually part of the seizure. \
Focal impaired awareness Formerly known as a complex partial seizure. Awareness is affected and the person may appear confused, vague or disorientated. Usually start in one area or group of brain cells, most often in the temporal lobe or frontal lobe of the brain. They can also start in other areas too. The seizures starting in the frontal lobe tend to be shorter than the ones from the temporal lobe. They may be more likely in people who have had a head injury, brain infection, stroke, or brain tumour. Often though, the cause is unknown.
Generalised Onset Absence A sudden lapse in awareness and responsiveness that look like brief staring spells or daydreaming Like other kinds of seizures, absence seizures are caused by abnormal activity in a person’s brain. Doctors often don’t know why this happens. Most absence seizures are less than 15 seconds long. It’s rare for an absence seizure to last longer than 15 seconds. They can happen suddenly without any warning signs.
Tonic-Clonic The body stiffens (the tonic phase) and then the limbs begin to jerk rhythmically (the clonic phase) “Sometimes caused by underlying health problems, such as: Injury or infection:
Traumatic head injuries, Infections, such as encephalitis or meningitis, or a history of such infections, Injury due to a previous lack of oxygen, Stroke
Congenital or developmental abnormalities:
Blood vessel malformations in the brain,
Genetic syndromes, Brain tumors. Metabolic disturbances: Very low blood levels of glucose, sodium, calcium or magnesium,
Withdrawal syndromes, Using or withdrawing from drugs, including alcohol. \
Myoclonic Sudden single jerks of a muscle or a group of muscles that may last no more than a second or two. Myoclonus may develop in response to infection, head or spinal cord injury, stroke,
brain tumours, kidney or liver failure, lipid storage disease, chemical or drug poisoning,
or other disorders. Prolonged oxygen deprivation to the brain, called hypoxia, may result in posthypoxic myoclonus. Myoclonus can occur by itself, but most often it is one of several symptoms associated with a wide variety of nervous system disorders. For example, myoclonic jerking may develop in
Seizure Type Seizure Sub-Type Conditions Triggers/Causes
Tonic Can occur when a person is asleep or awake and involves a brief stiffening of the body arms or legs. The person will suddenly fall if standing or sitting. patients with multiple sclerosis, Parkinson’s disease, Alzheimer’s disease, or Creutzfeldt-Jakob disease. Myoclonic jerks commonly occur in persons with epilepsy, a disorder in which the electrical activity in the brain becomes disordered leading to seizures. 12
Atonic Brief seizures that cause a sudden loss of muscle tone and the person often falls to the ground or will have a sudden head nod if sitting. The cause of atonic seizures is often unknown. Some patients may be more likely to have seizures because of changes in their genes. 4
Clonic Although uncommon they cause jerking in various parts of the body. Originates in both halves (hemispheres) of the brain simultaneously. A tonic or clonic seizure can also begin in one area of the brain (called a partial or focal seizure), affecting only one part of the body such as an arm or a leg. 16
Unknown Onset N/A The seizure cannot be diagnosed as either focal or generalised onset. Sometimes this classification is temporary and as more information becomes available over time or through further testing, the type of

Non epileptic Seizures

Non epileptic seizures are known as psychogenic non-epileptic seizures (PNES). PNES have been labelled many names. Some common terms used are:

  • Pseudo seizures
  • Dissociative seizures
  • Non epileptic events
  • Non epileptic attack disorder (NEAD)
  • Functional neurological disorder (FND)
  • Conversion disorder (psychiatric diagnosis) 17
Seizure Type Seizure Sub-Type Conditions Triggers/Causes
Non Epileptic (Psychogenic non-epileptic seizures (PNES)) N/A Sudden, involuntary changes in behaviour, sensation, motor activity, cognitive processing (can include change in level of consciousness) or autonomic function (e.giuiu. blood pressure, heart rate) linked to psychological or social distress. These events look like epileptic seizures, but are not caused by abnormal electrical discharges in the brain. Emotional or psychological cause rather than a physiological one and can be seen in people with or without epilepsy. PNES function as a coping mechanism. Research indicates that people with these events are more likely to use poor coping strategies to handle stress.

Febrile Seizures

Seizure Type Seizure Sub-Type Conditions Triggers/Causes
Febrile Seizure N/A Febrile seizures are seizures or convulsions that occur in young children and are triggered by fever. Young children between the ages of about 6 months and 5 years old are the most likely to experience febrile seizures; this risk peaks during the second year of life… The vast majority of febrile seizures are convulsions. Most often during a febrile seizure, a child will lose consciousness and both arms and legs will shake uncontrollably. Less common symptoms include eye rolling, rigid (stiff) limbs, or twitching on only one side It has been established that febrile seizures and its extended syndromes like generalized epilepsy with febrile seizures (FS) plus (GEFS+) and Dravets syndrome have been associated with mutations especially in SCN1A and GABRG2 genes. In patients, the onset of FS is likely due to the combined effect of temperature and inflammation in genetically vulnerable individuals because fever is often associated with infection… We demonstrated age-dependent dysregulated temperature control and that temperature elevation produced myoclonic jerks, generalized tonic clonic seizures (GTCSs) and heightened anxiety-like symptoms in

Infantile Spasms (West Syndrome)

Seizure Type Seizure Sub-Type Conditions Triggers/Causes
Infantile Spasms (also referred to as “West Syndrome”) N/A The spasms consist of a sudden stiffening. Often the arms flung out as the knees are pulled up and the body bends forward (