People of all ages are affected by issues such as forgetting to take a dose. However, other problems with adherence
are likely to differ depending a patient’s stage of life. Research suggests the biggest improvements in adherence to anti-epileptic
medicines occur if multiple strategies are used at once, such as education about epilepsy and anti-epileptic medicines
combined with reminders or alerts when doses are due, and additional intensive follow-up such as increased appointment
frequencies or phone calls between appointments.4, 5 Involving a patient’s entire health care team, and their
family, is likely to maximise the chances of improving adherence.
Forgetfulness is a key reason for people with epilepsy or their caregivers missing doses. Remembering to take doses
can be more difficult for patients with epilepsy due to:
- Problems with cognitive function or memory; reported in up to 30% of people with epilepsy 6
- The adverse effects of anti-epileptic medicines, which can cause patients to feel “slower” and can alter their mood
- Temporary cognitive difficulties following a seizure
- Conditions which cause cognitive difficulties in addition to epilepsy, e.g. epilepsy following a stroke
- Having to rely on someone else to remember, e.g. caregivers
N.B. Referral to or discussion with a neurologist is recommended if patients have a new onset of memory
difficulties, or a decline in pre-existing cognitive impairment.7
Strategies for reducing missed doses due to forgetfulness include:3
- Linking the medicine regimen to aspects of a patient’s/family’s daily routine
- Using reminder tools, e.g. an alarm, medication diary, smart phone application, chart, calendar, post-it notes
- Medicine packaging to encourage adherence, e.g. daily pill boxes (see: “Packaging to improve adherence”)
- Including others in the treatment plan, such as a family member, close friend or relative, especially if the patient
has a degree of cognitive impairment
- Telephone calls from the general practice team or pharmacist between appointments or dispensings to check medicine
use and encourage adherence
Packaging to improve adherence
Pharmacies can repackage some medicines from the original manufacturer’s packaging into dose administration aids. These
aim to improve adherence by addressing specific problems a patient may have, such as:8
- Complex regimens with multiple medicines
- Difficulty removing medicines from the original packaging
- Difficulty recalling if a medicine has been taken or not
Common repackaging options include blister packs or pill boxes with all the medicines a patient needs to take at one
time, e.g. Tuesday morning at breakfast, included in one compartment. Packaging is usually see-through so that patients
or caregivers can easily tell if doses have been taken. Medicines can also be repackaged into rolls of individual tear-off
sachets, where each sachet contains the medicines to be taken at one time with a printed description on the sachet of
the time of dosing and medicines included.8 Availability and costs of these packaging options will differ
Help patients and caregivers to understand epilepsy
Epilepsy is associated with stigma and misconceptions in the community about its causes and effects.9, 10 Across
different cultures epilepsy has been, and in some cases still is, seen as a mental illness, contagious, a curse or evil
spirit.11 Clinicians may need to discuss erroneous beliefs to help parents come to terms with their child’s
diagnosis. Some people may be in denial of the diagnosis and not wish to administer anti-epileptic medicines as doing
so would be an acknowledgement of their or their child’s condition. Engaging with an epilepsy support organisation may
Patient and caregiver support is available from:
- Secondary care:
- Some DHBs will have epilepsy or neurology Nurse Specialists who can assist with adherence
- National organisations:
- International organisations:
Discuss the need for regular use of anti-epileptic medicines
Anti-epileptic medicines generally have half lives less than 24 hours.12 Regular dosing is therefore necessary
to maintain therapeutic levels and maximise seizure control. All anti-epileptic medicines are prescribed with daily dosing
Patient education about how anti-epileptic medicines work is available from:
Highlight the risks of lack of adherence
Missing doses of epilepsy medicines increases the risk of a seizure occurring. Good adherence is recommended as a key
strategy for reducing the risk of sudden unexpected death in epilepsy (SUDEP), which can be triggered by tonic-clonic
seizures (see: “Sudden unexpected death in epilepsy [SUDEP]”).14, 15 A lack of adherence can also result in
more hospital visits and longer-term effects on health. A study of over 33,000 people with epilepsy in the United States
found that patients who collected less than 80% of their prescribed anti-epileptic medicines had a 20% higher rate of
emergency department visits, 40% higher rate of hospitalisation and three-fold higher risk of mortality than patients
who collected over 80% of their medicines.16, 17
Therefore, being adherent to their medicine regimen can help to reassure patients who are fearful or embarrassed about
experiencing a seizure. It can also ease anxiety which may prevent the patient from engaging in social or sporting events,
or affect their focus at school or work.10
Missing one or two doses does not necessarily mean a patient will experience a seizure, and conversely being adherent
to medicines does not guarantee that a patient will be seizure-free. This may lead to patients or caregivers thinking
they can “get away with” skipping a dose or that regular dosing is not worthwhile. Emphasise that good adherence will
decrease their risk of a seizure, and that having a seizure, despite good adherence, is not a “failure”.1
Sudden unexpected death in epilepsy (SUDEP)
Good adherence to anti-epileptic medicines is recommended to reduce the risk of seizure, which in turn reduces the risk
of SUDEP.7, 15 SUDEP is not yet fully understood and it is unclear why some seizures in some patients result
in sudden death. The risk is associated with severity of epilepsy and frequency of tonic-clonic seizures, with the highest
rates reported in patients who have been referred for, or undergone, surgery to treat their epilepsy.14 Incidence
rates in people treated in the community range from < 1–20 cases per 10,000 patients, per year.14 Most
cases of SUDEP occur in the context of a tonic-clonic seizure, often at night.14, 15 Data from isolated cases
which occurred while a patient was being monitored show that sudden death may be caused by cardiac arrest, apnoea or cerebral
Provide clear, simple medicine regimens
Guidelines for the pharmacological treatment of epilepsy recommend monotherapy as the first-line approach,7 which
is also likely to improve medicine adherence.3
Ensure patients and caregivers have written instructions for their medicine regimen
Medicine regimen instructions are usually provided by the patient’s epilepsy care team and should include advice on
what to do if a dose is missed, how to manage adverse effects and when to seek medical assistance.1 Check that
patients and caregivers understand these instructions and clarify any areas of confusion.
Further information on taking anti-epileptic medicines is available from:
Check if any changes have been made to a patient’s medicine regimen
If adherence has recently decreased, check if the prescribed medicine has changed; a different brand name and appearance
of a medicine may lead to confusion about dosing or concerns regarding adverse effects or efficacy, which may require
reassurance. Encourage patients and caregivers to refer to medicines by their generic name, i.e. active ingredient, so
they are more confident with any brand changes.
See if simple changes to the regimen would help
In some cases simple changes can help make a regimen more practical and easier to adhere to, e.g. a volume of liquid
rounded to the nearest simple unit or dosing intervals changed to more convenient times, e.g. outside of school or work,
to coincide with mealtimes.
Make it easier for patients to get medicines
Less frequent dispensings may improve adherence, particularly for patients or caregivers who have difficulty accessing
a pharmacy due to location or transport issues. Ideally anti-epileptic medicines should be dispensed in 90-day lots whenever
possible and the dispensing of any other medicines the patient is taking can be co-ordinated to reduce the overall number
of trips they need to make to the pharmacy.1
The following anti-epileptic medicines are normally dispensed “stat” in 90-day lots:18
- Sodium valproate, liquid formulation
- Phenytoin sodium
Clonazepam and clobazam are safety medicines which means that they can be dispensed in less than 90-day lots if there
is a safety concern. The prescriber can determine the dispensing frequency by indicating this on the prescription.
The following anti-epileptic medicines are dispensed in monthly lots, but prescribers can endorse prescriptions with
“certified exemption” in order for them to be dispensed in 90-day lots where appropriate:18
The remaining anti-epileptic medicines, such as sodium valproate tablets, levetiracetam and ethosuximide are dispensed
in monthly lots. However, patients who meet access exemption criteria can obtain 90-day stat dispensings of these medicines.
To do this, the patient or a representative such as a parent signs the back of the prescription, indicating that they
meet one of the following access exemption criteria:18
- They have limited physical mobility
- They live and work more than 30 minutes from the nearest pharmacy by their normal form of transport
- They are relocating to another area
- They are travelling extensively and will be out of town when the repeat prescriptions are due
Helping with costs
Patients who have a high use of general practice services and are not eligible for a Community Services Card may obtain
reductions on the costs of some visits to the doctor and some prescriptions with a High Use Health Card (see: “The
High Use Health Card”). Remind patients and caregivers that they only need to pay the prescription fee for a maximum of 20
prescriptions per family per year. Patients will need to keep receipts if they collect prescriptions from different pharmacies.
N.B. Patients with epilepsy who are having problems with adherence can be referred to the pharmacy to assess
whether they are eligible for Long Term Condition service review.
The High Use Health Card
When patients have seen their general practitioner 12 times or more in a year for the same condition, they become eligible
for the High Use Health Care. General practitioners must apply for the card, which allows the practice to receive a higher
subsidy for patients with high health needs. The card provides the patient with same benefits as a Community Services
Card for prescription fees and general practitioner visits, such as reduced fees for after-hours visits or seeing another
doctor, so patients who already have one of these will obtain no additional benefit from a High Use Health Card.
For further information on the High Use Health Card, see:
Reduced adherence may be due to adverse effects
Patients who worry about adverse effects are more likely to be non-adherent to their prescribed anti-epileptic medicines.19 Anti-epileptic
medicines can be associated with a range of cognitive and psychological adverse effects which can make adherence more
difficult, such as:20
- Sedation and dizziness
- Mood changes: depression and changes in behaviour or personality
- Cognitive difficulties
Clinicians may find it difficult to distinguish adverse effects of the medicines from symptoms associated with a patient’s
underlying condition. Many adverse effects of anti-epileptic medicines are dose-related and can be minimised by slow upwards
titration.15 If adverse effects are intolerable, consult with the clinician overseeing the patients treatment
to see if a dose reduction, possibly followed by slowly increasing back to the same dose, is appropriate.15 For
some medicines a change in formulation may alleviate dose-related adverse effects, e.g. a modified release formulation
of carbamazepine minimises the incidence of dizziness and blurred vision associated with peak carbamazepine levels.7,
Sedation and dizziness after initiating an anti-epileptic medicine typically improve with time. However, tolerance to
adverse effects varies between patients and the particular medicine used. For patients with ongoing sedation or dizziness,
discuss the possibility of changing medicines with the clinician overseeing their treatment.
Anti-epileptic medicines can also result in weight gain, which may influence adherence; this occurs most often in patients
taking sodium valproate, carbamazepine, vigabatrin or gabapentin.21
Check for low mood
Depressed mood can be associated with poor adherence and several studies have documented higher rates of depression
in people with epilepsy than in the general population.15 In addition, anti-epileptic medicines can increase
the risk of suicidal ideation.22 This can also influence which medicines are prescribed, e.g. levetiracetam
is generally avoided in patients with a history of significant depression or attempted suicide.
Regularly assessing mood can help detect problems as they develop. Discuss patients with a new onset of depression or
suicidal ideation with the clinician overseeing the patient’s epilepsy management; a switch in anti-epileptic medicine
may be appropriate.
While many barriers to medicine adherence are common to all patients, some issues are unique to certain patient groups.
Medicine adherence in young children is dependent on their caregivers. Caregivers need to understand why anti-epileptic
medicines are used and the importance of regular dosing, remember to administer doses, and deal with any difficulty or
refusal to take medicines. In families with genetic epilepsies, adherence can be more difficult if a parent also has epilepsy
and experiences similar problems with remembering doses.
Make sure caregivers and children are clear on responsibilities
Adherence may be affected by confusion over who is responsible for a child’s medicines. For example, one parent may
believe the other has already given the child their medicine.
As children develop, they will become increasingly responsible for taking their own medicines. Clinicians will need
to respond to this by shifting the focus of epilepsy education and management to the child rather than the caregiver.
Communication about responsibility becomes even more important during any transition of care. Uncertainty about who is
“in charge” could mean that the child could forget their dose while the caregiver believes they have taken their medicine.
In some cases, responsibility may have been given to the child too early, and they may discontinue use or miss doses without
a caregiver being aware.23 Check that both caregiver and child are clear on responsibilities and suggest methods
to check that doses are not being missed, e.g. a checking off dates on a calendar.
Working with stigma and embarrassment
Although stigma can affect people of all ages with epilepsy, children and young people can be particularly affected,
and feel embarrassed about having epilepsy and being different to their peers. As a result, they may not wish to take
their prescribed medicines around friends or classmates.7, 24 Reassure children and their caregivers that many
other young people have a long-term health condition which involves daily medicines and the risk of an event, e.g. children
with type 1 diabetes who take insulin and children with asthma who use inhalers, and this does not make them “abnormal”.
Dosing schedules which do not require taking medicines at school may help reduce stigma or embarrassment, and allow the
caregivers to maintain responsibility rather than relying on the school. Discuss with children ways that they could take
medicines in private while at school if this is necessary.
Ask about difficulty swallowing or palatability issues
Young children are likely to be prescribed liquid formulations of anti-epileptic medicines and gradually transition
to tablet or capsule formulations at older ages. This can affect adherence if children find swallowing these medicines
difficult or it causes anxiety, e.g. fear of choking.
Strategies for improving adherence in children who have difficulty swallowing tablets or capsules include:
- Tilting the head forward while swallowing; this results in a longer closure of the airway to prevent aspiration and
patients report their ability to swallow medicines is improved.25, 26
- Training children to be able to swallow progressively larger items, e.g. using lollies.27 For instructions,
- Some formulations may be crushed or compounded into a suspension. Discuss options with a pharmacist. For children
prescribed topiramate, a sprinkle capsule formulation is available; capsules can be opened and the contents sprinkled
on food for easier administration.13
Pharmacists are well placed to initiate discussions with patients and caregivers about any difficulties in taking medicines,
and to raise these issues with the medical team.
Further information on giving medicines to children is available at:
Seizures may affect a person’s work or study, their ability to hold a driver’s licence, reduce their independence and
have other longer-term effects on their future health. Seizures may have a higher risk of consequences in older adults,
such as an increased risk of fracture with a fall during a seizure.
Complex regimens, “pill burden” and polypharmacy
Older adults with epilepsy are more likely to be taking multiple medicines due to co-morbidities. Ask patients whether
they are finding it difficult to take the number or volume of medicines they are prescribed. Consider any other medicines
a patient is taking and whether their total regimen of medicines could be simplified.
Anti-epileptic medicines may also have interactions with other prescribed medicines which increase the risk of adverse
effects, and therefore may mean that patients stop taking their medicines. Switching anti-epileptic medicines may be possible
to avoid interaction effects. Newer anti-epileptic medicines have fewer effects on hepatic enzymes than older medicines,
such as phenytoin or carbamazepine, and therefore may be less likely to cause interactions.30
If a female patient requires hormonal contraception, check for interactions with anti-epileptic medicines before initiating,
as interactions can reduce the efficacy of either medicine despite good adherence. The efficacy of combined hormonal and
oral progesterone-only contraceptives is reduced by a number of anti-epileptic medicines, including carbamazepine, phenytoin
and topiramate.28, 29 Lamotrigine levels are decreased by the use of combined hormonal contraceptives.28 Intrauterine
devices (copper or levonorgestrel) and medroxyprogesterone acetate injections are recommended for women using enzyme-inducing
anti-epileptic medicines.29 Women who discover they are pregnant should not abruptly stop their medication.
Check for swallowing or dexterity issues
Patients with post-stroke epilepsy or epilepsy following a head injury may have potential issues with dexterity or swallowing.
Discussion with or referral to a Speech Language Therapist may be necessary for some patients with dysphagia. Patients
who have trouble handling medicine containers or pills may benefit from input from a pharmacist, or involving family members
or carers in their epilepsy management.
Use the NZF Interactions Checker when initiating new medicines in people taking anti-epileptic medicines: