People with epilepsy can face unique challenges in achieving and maintaining optimal personal lifestyle goals.
The importance of taking your epilepsy medicine
- Almost 3-quarters have successful seizure control once the most effective therapy is identified.
- However, less than half of people with epilepsy take their medicine as prescribed.
- Taking medicine as prescribed is called adherence.
Reasons for not taking medicine as prescribed, or non-adherence, can include:
- I forgot
- I do not like the side effects
- I am feeling better; I do not need this medicine
- I worry about what others will think of me
“Medication Compliance” – Describe a one way relationship on which patients are expected to follow the direction provided by a healthcare provider. More recently, doctors and patients have begun to use the term “medication adherence” to reflect a more interactive therapeutic partnership between a a doctor and a patient.
Medicine adherence can be strongly influenced by how involved you are with your care plan and the amount of time that has passed since your diagnosis.
People with epilepsy who don’t take their medicine as prescribed tend to have more seizures and lifestyle disruption, more frequent unplanned hospitalizations, and higher cost of treatment.
Adherence with prescription medicines is not limited to people who miss a dose or take a smaller dose than prescribed, Taking too much medicine is considered non-adherence.
Not taking your medicine as prescribed can affect your life on many ways, including:
- Having more seizures
- Impaired ability to work or attend school
- limited ability to drive
- Increased visits to your healthcare provider
- Increased cost of healthcare
There are opportunities to improve adherence with your prescribed treatment, For example, you can:
- Keep a diary to track seizures
- Use medicine reminders or daily activities like brushing your teeth as prompts to take your medicine
- Stay informed about your treatment plan and if you have questions
Continue taking your medicine even when you feel it isn’t working or you don’t need it.
A person taking medicine for their epilepsy is more likely to be permitted to drive a car than someone who is not taking medicine.
You and your healthcare team can work together to address any medicine concerns or work/school challenges, or to help improve adherence to your prescribed medicines.
It is important to work with your healthcare team to identify and understand your personal goals, and review these goals anytime a medicine is added, modified, or deleted from your treatment plan.
- Have a clear understanding of your seizure goals and how medicines can help achieve those goals
- If a medicine is being added or switched, understand why
- If a dose is being changed, understand why and ask about potential side effects
- During doctor visits, discuss any side effects you have even if you don’t think they are related to your medicine
- Tell your healthcare team about any changes in your overall health (for example: changes in your weight, mood, or eating habits)
- Have a clear understanding about the timing of medicine doses (for example, before or after meals), and what to do if you miss a dose for any reason
- Ask if there are ways to modify the number of doses you need to achieve your planned treatment goals
- If you are taking multiple medications for epilepsy and/or health conditions
- Look for ways to take all or some of your medicines at the same time each day
- Have your prescriptions filled at the same time
Your doctor will probably need to adjust your medicines or doses more than once to find the best treatment plan for you. Keeping track of how you feel and telling your doctor about it are an important part of this process.
Trying different medicines and making medicine adjustments is normal. In a recent survey, more than three-quarters of people with epilepsy reported taking 2 or more medicines to control their seizures, and all reported some form of medicine change (dose adjustment or new medicine) in the past year.
Talk to your healthcare provider about developing a personalized medicine adherence plan that will help you:
- Take your medicine at the same time each day
- Take your medicine even if you feel well or don’t think it is working
- Fill or refill your prescription on time
Special Adherence Considerations for Children
Adherence is especially important when treating children. Children change physically, mentally, and socially, so their treatment needs may change, as well. Although some children outgrow their epilepsy, many move through childhood and adolescent years and into adulthood while managing this condition.
For some children with epilepsy that is difficult to treat, a healthcare provider may recommend a special diet, which can be challenging for the child and family to adhere to.
Adherence challenges are somewhere different in children. Compared with adults, children may have more:
- Dependence on caregivers
- Uncooperative behavior
- Dislike of taste or difficulty swallowing pills
- Activities that make routine schedules difficult
The overall management of epilepsy in children involves the child, their parents or guardians, other family members, and teachers. Education is key because:
- Children who don’t fully understand epilepsy tend to have fears or negative attitudes about their condition
- Family-focused interventions focused on education and problem-solving can help improve a child’s adherence to prescribed medicine
Newly diagnosed children with epilepsy can benefit from an environment of low parental stress and strong support , which can help improve the child’s quality of life while also encouraging adherence.
Special adherence considerations for adolescents
For adolescents, epilepsy can hinder the development of self-esteem, independence, social functioning, and peer relationships. Adherence to prescribed medicines is a common challenge for this age group.
Adolescence is a time when people are beginning to make independent decisions about their education, career, and the development of intimate relationships with others. Adolescents with epilepsy tends to have lower social skills, such as cooperation, assertion, and self-control.
This can also be a difficult time because of the transition from pediatric healthcare to independent healthcare, where the adolescent should take on greater responsibility for self-management. Cognitive issues commonly associated with epilepsy, such as impaired memory and activity-planning skills, can complicate this transition.
Understanding the media preference of an adolescent with epilepsy (internet, social media, television and radio) can help guide them to helpful information resources.
Special adherence considerations for older adults
Adherence in older adults with epilepsy can be especially challenging because they:
- Typically take more medications, both for their epilepsy and other conditions, such as hypertension, diabetes, elevated cholesterol, and heart, kidney, or liver disease
- May have declines in memory, cognitive skill, or ability to understand information from caregivers
- May be depressed
- May have more side effects or more serious side effects from their medications
- Can be resistant to healthcare interventions
- May feel threatened or concerned about their ability to live independently
- May encounter cost or insurance challenges