Helping Patients With Epilepsy Adhere To Their Medicines
Medicines management NeurologyHelping patients with epilepsyadhere to their medicinesPeople with epilepsy require good adherence to anti-epileptic medicines for optimal seizure control. However,maintaining good adherence long-term can be difficult. The primary care team can provide education, supportand practical assistance to patients with epilepsy and their families, such as helping to simplify medicineregimens and putting schedules and routines in place. Assistance is also available from epilepsy supportorganisations and specialist nurses.Key pr ac tice points:Good adherence to anti-epileptic medicines is necessary tomaximise a patient’s chance of being seizure free. However,poor adherence is reported in up to half of patients withepilepsy.Forgetfulness is a major contributor to patients, or theircaregivers, missing dosesEncourage patients and caregivers to set a routine fortaking medicines and to use reminder techniques such asalarms, smart phone apps, medicine blister packs, pill boxesor a diary so that doses are not forgottenEducation is a key part of helping patients and caregiversunderstand the need for regular dosing of anti-epilepticmedicinesSimple medicine regimens and 90-day dispensings ofmedicines can help improve adherence; review a patient’sprescriptions and how often they need to visit a pharmacyto see if changes can be madewww.bpac.org.nzAssessing adherence: assume missed dosesPatients with epilepsy require ongoing use of anti-epilepticmedicines to optimise seizure control. Missing occasionaldoses is to be expected for patients with any long-termcondition. However, there is evidence that poor adherence isa particular problem for patients with epilepsy. Studies reportthat 20–50% of patients with epilepsy have poor adherenceto their medicines, depending on the definition of adherenceand length of follow-up.1 Poor adherence in the first monthof initiating an anti-epileptic medicine is a predictor ofreduced adherence long term,2 therefore early follow-up isrecommended to assist with any issues.When asking about adherence to medicines, reassurepatients and caregivers that missing doses is normal. Forexample, instead of asking “do you forget to take yourmedicine?”, ask “could you have missed some doses” or “howoften do you forget to take doses?”. Asking the same questionSeptember 20171
in different ways can be a good technique to elicit a moreaccurate response.Patients may not take a medicine as intended for a numberof reasons (Table 1). For children with epilepsy, caregivers areresponsible for adherence to medicines rather than the patientthemselves. Understanding the reasons why medicines arenot being taken is essential for putting processes in place toovercome any barriers.Strategies to improve adherence: usemultiple approachesPeople of all ages are affected by issues such as forgetting totake a dose. However, other problems with adherence are likelyto differ depending a patient’s stage of life. Research suggeststhe biggest improvements in adherence to anti-epilepticmedicines occur if multiple strategies are used at once, suchas education about epilepsy and anti-epileptic medicinescombined with reminders or alerts when doses are due, andadditional intensive follow-up such as increased appointmentfrequencies or phone calls between appointments.4, 5 Involvinga patient’s entire health care team, and their family, is likely tomaximise the chances of improving adherence.Outsmarting forgetfulnessForgetfulness is a key reason for people with epilepsy or theircaregivers missing doses. Remembering to take doses can bemore difficult for patients with epilepsy due to:Problems with cognitive function or memory; reported inup to 30% of people with epilepsy 6The adverse effects of anti-epileptic medicines, whichcan cause patients to feel “slower” and can alter theirmood or cognitionTemporary cognitive difficulties following a seizureConditions which cause cognitive difficulties in additionto epilepsy, e.g. epilepsy following a strokeHaving to rely on someone else to remember, e.g.caregiversN.B. Referral to or discussion with a neurologist is recommendedif patients have a new onset of memory difficulties, or a declinein pre-existing cognitive impairment.7Strategies for reducing missed doses due to forgetfulnessinclude:3Linking the medicine regimen to aspects of a patient’s/family’s daily routineUsing reminder tools, e.g. an alarm, medication diary,smart phone application, chart, calendar, post-it notesMedicine packaging to encourage adherence, e.g. dailypill boxes (see: “Packaging to improve adherence”)Including others in the treatment plan, such as a family2September 2017member, close friend or relative, especially if the patienthas a degree of cognitive impairmentTelephone calls from the general practice team orpharmacist between appointments or dispensings tocheck medicine use and encourage adherenceFurther information:Strategies for remembering cinestips-to-remember-to-take-them/List of smartphone apps: www.epilepsysociety.org.uk/memory-appsHelp patients and caregivers to understand epilepsyEpilepsy is associated with stigma and misconceptions in thecommunity about its causes and effects.9, 10 Across differentcultures epilepsy has been, and in some cases still is, seen asa mental illness, contagious, a curse or evil spirit.11 Cliniciansmay need to discuss erroneous beliefs to help parents cometo terms with their child’s diagnosis. Some people may be indenial of the diagnosis and not wish to administer anti-epilepticmedicines as doing so would be an acknowledgement of theiror their child’s condition. Engaging with an epilepsy supportorganisation may help.Patient and caregiver support is available from:Secondary care:– Some DHBs will have epilepsy or neurology NurseSpecialists who can assist with adherenceNational organisations:– Epilepsy New Zealand: www.epilepsy.org.nz– The Epilepsy Foundation of New Zealand:www.epilepsyfoundation.org.nzInternational organisations:– The Epilepsy Foundation (United States):www.epilepsy.com– Epilepsy Action (United Kingdom):www.epilepsy.org.ukDiscuss the need for regular use of anti-epilepticmedicinesAnti-epileptic medicines generally have half lives lessthan 24 hours.12 Regular dosing is therefore necessary tomaintain therapeutic levels and maximise seizure control.All anti-epileptic medicines are prescribed with daily dosingregimens.13Patient education about how anti-epileptic medicines workis available from: tic-medication/www.bpac.org.nz
Table 1: Common reasons for lack of medicine adherence in people with epilepsy.3Unintentional causesCauses for intentional reductionsin dose or dose frequencyOther physical, cognitive andpsychological causesForgetfulnessPoor understanding of their/their child’s epilepsy, and the need for ongoingmedicinesMisunderstanding over prescribed medicine doses or frequencies, e.g. complicatedtreatment regimensConcerns over adverse effectsBelieving they have a low risk of seizureBelieving they no longer need treatmentFeeling the inconvenience and adverse effects of treatment are not worth the benefitDifficulty swallowing or palatability issuesCognitive impairment, including medicine-induced or post-ictal impairmentProblems with motor function“Pill burden”: the number and frequency of tablets or volume of liquid prescribedFeelings of stigma and embarrassmentDepressionLack of clear responsibility in the family for who should ensure children takemedicinesRebellion/refusal to take medicinesHighlight the risks of lack of adherenceMissing doses of epilepsy medicines increases the risk ofa seizure occurring. Good adherence is recommended asa key strategy for reducing the risk of sudden unexpecteddeath in epilepsy (SUDEP), which can be triggered bytonic-clonic seizures (see: “Sudden unexpected death inepilepsy [SUDEP]”).14, 15 A lack of adherence can also resultin more hospital visits and longer-term effects on health.A study of over 33,000 people with epilepsy in the UnitedStates found that patients who collected less than 80% oftheir prescribed anti-epileptic medicines had a 20% higherrate of emergency department visits, 40% higher rate ofhospitalisation and three-fold higher risk of mortality thanpatients who collected over 80% of their medicines.16, 17Therefore, being adherent to their medicineregimen can help to reassure patients who are fearful orembarrassed about experiencing a seizure. It can also easeanxiety which may prevent the patient from engaging insocial or sporting events, or affect their focus at school orwork.10Missing one or two doses does not necessarilymean a patient will experience a seizure, and converselybeing adherent to medicines does not guarantee that apatient will be seizure-free. This may lead to patients orcaregivers thinking they can “get away with” skipping adose or that regular dosing is not worthwhile. Emphasisethat good adherence will decrease their risk of a seizure,and that having a seizure, despite good adherence, is nota “failure”.1www.bpac.org.nzPackaging to improve adherencePharmacies can repackage some medicines from theoriginal manufacturer’s packaging into dose administrationaids. These aim to improve adherence by addressingspecific problems a patient may have, such as:8Complex regimens with multiple medicinesDifficulty removing medicines from the originalpackagingDifficulty recalling if a medicine has been taken ornotCommon repackaging options include blister packs orpill boxes with all the medicines a patient needs to takeat one time, e.g. Tuesday morning at breakfast, includedin one compartment. Packaging is usually see-throughso that patients or caregivers can easily tell if doses havebeen taken. Medicines can also be repackaged intorolls of individual tear-off sachets, where each sachetcontains the medicines to be taken at one time with aprinted description on the sachet of the time of dosingand medicines included.8 Availability and costs of thesepackaging options will differ between pharmacies.September 20173
Provide clear, simple medicine regimensGuidelines for the pharmacological treatment of epilepsyrecommend monotherapy as the first-line approach,7 which isalso likely to improve medicine adherence.3Ensure patients and caregivers have written instructionsfor their medicine regimenMedicine regimen instructions are usually provided by thepatient’s epilepsy care team and should include advice onwhat to do if a dose is missed, how to manage adverse effectsand when to seek medical assistance.1 Check that patients andcaregivers understand these instructions and clarify any areasof confusion.to more convenient times, e.g. outside of school or work, tocoincide with mealtimes.Make it easier for patients to get medicinesLess frequent dispensings may improve adherence, particularlyfor patients or caregivers who have difficulty accessing apharmacy due to location or transport issues. Ideally antiepileptic medicines should be dispensed in 90-day lotswhenever possible and the dispensing of any other medicinesthe patient is taking can be co-ordinated to reduce the overallnumber of trips they need to make to the pharmacy.1The following anti-epileptic medicines are normally dispensed“stat” in 90-day lots:18CarbamazepineFurther information on taking anti-epileptic medicines isavailable from:The New Zealand Formulary for Children: www.nzfchildren.org.nz/nzf 70291Sodium valproate, liquid formulationPhenytoin sodiumPhenobarbitonePrimidoneHealth Navigator: ne/Check if any changes have been made to a patient’smedicine regimenIf adherence has recently decreased, check if the prescribedmedicine has changed; a different brand name and appearanceof a medicine may lead to confusion about dosing or concernsregarding adverse effects or efficacy, which may requirereassurance. Encourage patients and caregivers to refer tomedicines by their generic name, i.e. active ingredient, so theyare more confident with any brand changes.Clonazepam and clobazam are safety medicines which meansthat they can be dispensed in less than 90-day lots if there isa safety concern. The prescriber can determine the dispensingfrequency by indicating this on the prescription.The following anti-epileptic medicines are dispensed inmonthly lots, but prescribers can endorse prescriptions with“certified exemption” in order for them to be dispensed in 90day lots where appropriate:18GabapentinLacosamideSee if simple changes to the regimen would helpIn some cases simple changes can help make a regimenmore practical and easier to adhere to, e.g. a volume of liquidrounded to the nearest simple unit or dosing intervals changedLamotrigineTopiramateVigabatrinSudden unexpected death in epilepsy (SUDEP)Good adherence to anti-epileptic medicines isrecommended to reduce the risk of seizure, which inturn reduces the risk of SUDEP.7, 15 SUDEP is not yet fullyunderstood and it is unclear why some seizures in somepatients result in sudden death. The risk is associated withseverity of epilepsy and frequency of tonic-clonic seizures,with the highest rates reported in patients who have beenreferred for, or undergone, surgery to treat their epilepsy.144September 2017Incidence rates in people treated in the community rangefrom 1–20 cases per 10,000 patients, per year.14 Mostcases of SUDEP occur in the context of a tonic-clonicseizure, often at night.14, 15 Data from isolated cases whichoccurred while a patient was being monitored show thatsudden death may be caused by cardiac arrest, apnoea orcerebral shutdown.www.bpac.org.nz
The remaining anti-epileptic medicines, such as sodiumvalproate tablets, levetiracetam and ethosuximide aredispensed in monthly lots. However, patients who meet accessexemption criteria can obtain 90-day stat dispensings of thesemedicines. To do this, the patient or a representative such as aparent signs the back of the prescription, indicating that theymeet one of the following access exemption criteria:18They have limited physical mobilityThey live and work more than 30 minutes from thenearest pharmacy by their normal form of transportThey are relocating to another areaThey are travelling extensively and will be out of townwhen the repeat prescriptions are dueHelping with costsPatients who have a high use of general practice services andare not eligible for a Community Services Card may obtainreductions on the costs of some visits to the doctor andsome prescriptions with a High Use Health Card (see: “TheHigh Use Health Card”). Remind patients and caregivers thatthey only need to pay the prescription fee for a maximumof 20 prescriptions per family per year. Patients will needto keep receipts if they collect prescriptions from differentpharmacies.The High Use Health CardWhen patients have seen their general practitioner 12times or more in a year for the same condition, theybecome eligible for the High Use Health Care. Generalpractitioners must apply for the card, which allows thepractice to receive a higher subsidy for patients with highhealth needs. The card provides the patient with samebenefits as a Community Services Card for prescriptionfees and general practitioner visits, such as reduced feesfor after-hours visits or seeing another doctor, so patientswho already have one of these will obtain no additionalbenefit from a High Use Health Card.For further information on the High Use Health Card,see: h-card-paymentsN.B. Patients with epilepsy who are having problems withadherence can be referred to the pharmacy to assess whetherthey are eligible for Long Term Condition service review.Reduced adherence may be due to adverse effectsPatients who worry about adverse effects are more likely tobe non-adherent to their prescribed anti-epileptic medicines.19Anti-epileptic medicines can be associated with a range ofcognitive and psychological adverse effects which can makeadherence more difficult, such as:20Sedation and dizzinessMood changes: depression and changes in behaviour orpersonalityCognitive difficultiesClinicians may find it difficult to distinguish adverse effectsof the medicines from symptoms associated with a patient’sunderlying condition. Many adverse effects of anti-epilepticmedicines are dose-related and can be minimised by slowupwards titration.15 If adverse effects are intolerable, consultwith the clinician overseeing the patients treatment to see if adose reduction, possibly followed by slowly increasing back tothe same dose, is appropriate.15 For some medicines a changein formulation may alleviate dose-related adverse effects, e.g. amodified release formulation of carbamazepine minimises theincidence of dizziness and blurred vision associated with peakcarbamazepine levels.7, 15www.bpac.org.nzSeptember 20175
Sedation and dizziness after initiating an anti-epilepticmedicine typically improve with time. However, tolerance toadverse effects varies between patients and the particularmedicine used. For patients with ongoing sedation or dizziness,discuss the possibility of changing medicines with the clinicianoverseeing their treatment.Anti-epileptic medicines can also result in weight gain,which may influence adherence; this occurs most often inpatients taking sodium valproate, carbamazepine, vigabatrinor gabapentin.21Check for low moodDepressed mood can be associated with poor adherence andseveral studies have documented higher rates of depressionin people with epilepsy than in the general population.15 Inaddition, anti-epileptic medicines can increase the risk ofsuicidal ideation.22 This can also influence which medicines areprescribed, e.g. levetiracetam is generally avoided in patientswith a history of significant depression or attempted suicide.Regularly assessing mood can help detect problems asthey develop. Discuss patients with a new onset of depressionor suicidal ideation with the clinician overseeing the patient’sepilepsy management; a switch in anti-epileptic medicine maybe appropriate.Improving adherence in children withepilepsyWhile many barriers to medicine adherence are common toall patients, some issues are unique to certain patient groups.Medicine adherence in young children is dependent on theircaregivers. Caregivers need to understand why anti-epilepticmedicines are used and the importance of regular dosing,remember to administer doses, and deal with any difficulty orrefusal to take medicines. In families with genetic epilepsies,adherence can be more difficult if a parent also has epilepsyand experiences similar problems with remembering doses.Make sure caregivers and children are clear onresponsibilitiesAdherence may be affected by confusion over who is responsiblefor a child’s medicines. For example, one parent may believethe other has already given the child their medicine.As children develop, they will become increasinglyresponsible for taking their own medicines. Clinicians will needto respond to this by shifting the focus of epilepsy educationand management to the child rather than the caregiver.Communication about responsibility becomes even moreimportant during any transition of care. Uncertainty about whois “in charge” could mean that the child could forget their dosewhile the caregiver believes they have taken their medicine. Insome cases, responsibility may have been given to the childtoo early, and they may discontinue use or miss doses without6September 2017a caregiver being aware.23 Check that both caregiver and childare clear on responsibilities and suggest methods to checkthat doses are not being missed, e.g. a checking off dates ona calendar.Working with stigma and embarrassmentAlthough stigma can affect people of all ages with epilepsy,children and young people can be particularly affected, and feelembarrassed about having epilepsy and being different t
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
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