In the past several years, there has been much progress in the treatment of epilepsy with respect to new medicines, procedures, diets, and devices. However, these options are only beneficial if the patients who need them are aware of them and have access to care.
A lack of awareness of the treatment options can dramatically affect a patient's present and future quality of life. A 2012 Report from the Institute of Medicine (IOM) considers this particularly crucial.1
I have read many online posts on several healthcare-focused forums written by parents and patients of all ages who are desperately seeking information, help and advice. Some posts describe in great detail what they have either witnessed or experienced. In these cases, the internet can provide access to information and possible contact with others whose experiences may be similar. Sometimes, people experiencing strange symptoms visit these forums first (to be able to have some grasp of what they may be experiencing) so that they can relate it to their primary care provider (PCP).
PCPs Offer a Bridge
In epilepsy care, the PCP serves as a very sturdy and necessary bridge for patients who need referrals to specialists, not only for their initial neurology evaluation, but also to Level 4 comprehensive epilepsy centers (CEC) that can offer most, if not all, of the other available treatment options. In a way, the PCP reminds me of an air traffic controller. Instead of maintaining order in the skies and directing a safe take-off and landing, the PCP can and must manage and direct their patients with epilepsy toward achieving a seizure-free status and overall wellness so that they can have the opportunity to achieve the goals they desire.
Not all seizure activity is a dramatic event; some seizures might present as subtle changes or unusual events possibly recognized only by the individual. Because of this and because the PCP is considered to be the trusted keeper of all of the patient's private, protected, and most personal health information, the PCP may be the first person the patient confides in about the unusual events they have been experiencing.
For example, routine adolescent sports physicals, follow-up visits or annual Medicare wellness visits can provide an opportunity to detect an undiagnosed seizure disorder as well as the chance to assess the patient's progress if he or she is already under treatment. Frequently, the patient's family members or significant others may be present during the patient's visit, and they might be instrumental in describing the events that took place by providing valuable details regarding the events.
Allaying Patients' Fears
Once the patient has disclosed such information, the PCP now has the privilege of being the first one to thoroughly assess and examine the patient, using his or her knowledge of the events described by the patient. This initial assessment serves as one that can begin the process of discovery regarding the etiology of epilepsy. Because the PCP is the one who holds all of the past medical history (PMH) that may reveal important information regarding childhood illnesses or traumas that could relate to the history of the present illness (HPI), this initial assessment serves as one that can begin the process of discovery regarding the etiology of the events which may lead to a diagnosis of epilepsy.
Some patients may be afraid to reveal information about their experiences because stating it out loud makes these unusual and frightening events more real; because another person now knows; and because the patient is very unsure of what will now happen (having disclosed such information ) and what it will all mean to his or her "quality of life."
Some of their concerns may include wondering what (if any) changes this diagnosis may bring, and how it will affect those who depend on them. Will their ability to work be affected? Will they lose their job, or will their income be affected? Will they lose their health coverage? Will they lose their ability to drive? Will they be treated any differently by their family, friends, coworkers or boss? And last, if they have a seizure in public, will people think they're crazy and automatically (and erroneously) refer them to psychiatry?
Fortunately, this giant and courageous first step that the patient has taken means that the PCP can now take charge and assist his or her patient toward what hopefully may be a better quality of life. I hope all PCPs will appreciate how very difficult it may have been for the patient to disclose such information. Because the PCP has been entrusted with this information, they are now obligated to take the seat of that air traffic controller regarding these new revelations.
Remaining Integral After Referral
The PCP's initial plan will undoubtedly include an assessment; a focused interview specific to the complaint; a thorough review of the patient's history; a neurological exam; and a physical exam including complete blood work and an electrocardiogram (ECG). A thorough examination by the PCP will allow other possible causes to be ruled out and will provide valuable information when the initial referral to neurology is made. A referral to general neurology or to an epileptologist at a comprehensive epilepsy center will allow the patient to reach the needed level of care as quickly as possible.
According to guidelines for care established by the National Association of Epilepsy Centers (NAEC), it is recommended that the initial treatment for a patient who has experienced seizures be provided by the PCP by prescribing an antiepileptic drug (AED). If the patient's seizures are not completely arrested within 3 months after beginning the AED, then referral to neurology for further evaluation is warranted and should be done.2
Approximately 70% of patients will gain complete control of their seizures with one medication, but 30% will have refractory epilepsy with intractable seizures, therefore requiring additional treatment options found only at a comprehensive epilepsy center.
Once that initial referral has been made and the patient is being seen by a neurologist, the PCP should remain an integral member of the epilepsy healthcare team, because he or she will probably see the patient for other issues or routine care while the patient is under the neurologist's care. This gives the PCP the opportunity to evaluate the patient's quality of life (QOL) from all aspects, which is an expected part of the visit.
Questions to ask patients undergoing epilepsy treatment include: Is seizure activity still occurring? If so, under what circumstances, and how often do they occur? Have the seizures changed in any way? How is the patient tolerating the medication? How is the patient's QOL (i.e., how has it changed)? How is the patient's support system? Is the patient making progress in life, or is the patient failing in school or at his job? Is there any sort of change in cognition being reported by the patient? Is there evidence of depression or anxiety?
Just by talking to a patient, the PCP can be instrumental in determining whether or not a treatment is effective, the patient is benefitting from the care, or the patient's QOL is improving (or going downhill). Have their seizures stopped? The PCP can and should share their concerns about their patients with the epilepsy specialist, to keep them up-to-date and to learn what might be planned to improve the patient's situation. The PCP being able to ask these questions places them in an important and pivotal role.
It is important to stress the degree of efficacy regarding AED use and expected response. If one AED fails to stop a patient's seizure activity, chances are low that other AEDs will stop it, either (even with manipulation of the drugs).3 In addition, too much AED medication can cause seizures. At this point, other options must be sought.
PCPs should refer the patient to a board-certified epilepsy fellow (or to a neurophysiology fellow) at a patient-oriented, level-4 comprehensive epilepsy center (CEC) that is recognized by the National Association of Epilepsy Centers (NAEC). The PCP should not ever assume that the general neurologist will refer the patient to a CEC; it is imperative that the PCP makes this pivotal referral him- or herself, on the patient's behalf. The PCP is able and must take this step to direct the patient toward this next level of care where he or she will have access to all treatment options available including diet and surgery so that a specific plan can be developed and applied.
Early referral leads to the possibility of cessation of all seizure activity or to better seizure control, which is essential to prevent the very real degenerative effects of continued epileptogenic activity such as cognitive decline or a mirror focus. This pivotal step by the PCP is essential to the patient's being able to achieve their most productive quality of life. I am not at all saying that patients who continue to have seizures cannot be productive or enjoy their quality of life, but the earlier the patient is referred to a CEC, the greater opportunities the patient has to make life choices that they may not have had access to if the referral comes later in life or not at all. All PCPs are in the position to direct and co-manage the care of their patients with epilepsy from initial discovery to resolution. My hope is that they will seize that opportunity.
Elena Kay Bedingfield is a nurse practitioner and health care consultant in Greensboro, NC.
1. Institute of Medicine. IOM Report Identifies Public Health Actions for Improving the Lives of Those With Epilepsy 2012. http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=13379
2. National Association of Epilepsy Centers. Guidelines for Epilepsy Centers 2010. http://www.naec-epilepsy.org/spec_care/guidelines.htm.
3. Kwan P, Sperling MR. Refractory seizures: try additional antiepileptic drugs (after two have failed) or go directly to early surgery evaluation? Epilepsia. 2009; (50): 57-62.