Blog #32: Can Your Epilepsy Doctor Do a Better Job?

(This blog was originally posted on March 10, 2013)

 

 

          An online survey measured the quality of care of patients with epilepsy. Gaps in physician epilepsy care were found (1).

          On-line survey forms were sent to 348 active epilepsy patients. Two hundred twenty-one (64%) returned completed forms. Analysis of the results indicated that 80% of the respondents believed that they were aware of their seizure type, their epilepsy syndrome diagnosis and their current seizure frequency. They also had had an EEG and neuroimaging.

          However, fewer (60%) recalled having been asked at each visit about their medication side effects and discussing safety issues with their doctors.   

          It is important for physicians to remind patients that they need to avoid potential dangers during a loss of awareness that accompanied their seizures. These dangers include driving motor vehicles when seizures are not completely controlled. Patients also need to be reminded that they should avoid baths in a tub and taking showers, if at all possible, when no one else is at home. Needless to say, the bathroom door should never be locked; yet, bathroom doors have been broken down in order to attempt rescue. Most practicing clinical neurologists know of patients who have drowned under these circumstances. I personally have discussed these issues with practicing neurologists who admit that they do not always discuss these safety measures with their patients.

          Additionally, mothers need to avoid carrying infants over hot stoves and bodies of water; infants would be in danger should the mother drop the infant during a period of confusion or loss of consciousness.

          Only 46% of patients reported that reproductive issues had been discussed. Antiseizure medications and convulsions carry teratogenic risks, e.g. risks to the development of the fetus.

          Only 48% of patients who qualified for epilepsy surgery were referred to epilepsy surgical specialists. Surgical treatment can be highly beneficial with minimal, if any, discernible side effects.

          The survey demonstrated that potential gaps in epilepsy care exist. Elimination of these oversights could improve the quality of care to our epilepsy patient population. Patients, too, need to be aware that they can take the initiative to discuss these facets of their epilepsy care with their physicians.

1.     Wicks, P, Fountain, NB. Patient assessment of physician performance of epilepsy quality-of-care measures. Neurology: Clinical Practice, December 2012:335-342.

 

 

 

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. DINGS is his first novel.

 

Blog #22: Driving with Epilepsy: Morality vs. Necessity

(This blog was originally posted on April 27, 2012)

 

 

 

          Modern societies cherish the privilege of driving. But what do people do if they suffer episodes of loss of awareness? They hope that warning symptoms will allow them to pull over to the side of the road. They plan to not drive on a day when they have had a seizure or if they experience familiar premonitory symptoms cautioning that a seizure is likely to occur. Not everybody with epilepsy have such warnings. If warnings occur, can an effective action actually prevent catastrophe on the road? Will people use common sense? Too often they won’t. Patients need to drive to work, for shopping, and for a myriad of other errands. These needs can overrule common sense. They disregard their own safety and the safety of others in their wishful thinking that nothing will happen.

            Only six states require physicians to report seizures to the health department. Physicians in these six states are held liable for the damages caused if epilepsy patients are not reported as required. These states are California, Nevada, Oregon, New Jersey, Delaware and Pennsylvania. Once reported the health departments in these states notify their respective Departments of Motor Vehicles (DMV). These DMV offices send forms to the patients who complete their portion and then take the form to their physicians for them to complete the medical questions.

            Questions on these forms include: what happens during the spell? How long do the spells last? When did the condition begin? What medications are being used to prevent the spells, if any? When was the last spell? One challenging question asks physicians how safe is it for the patient to drive? “Is the patient safe to drive? Yes….No….Uncertain….” Often, patients try to sway the physician’s answer. The DMV uses the physician’s answer as a guide, but the DMV makes the ultimate decision.

            There are many variables in making diagnoses. Precise, accurate and honest answers are often difficult to achieve. Some patients have seizures only during sleep (so-called nocturnal seizures/epilepsy). The DMV sometimes allows these patients to drive. Other patients swear that their seizures never involve loss of awareness (so-called “simple partial seizures”). These seizures may include numbness, shaking, seeing spots and other symptoms without loss of consciousness. Are all of their seizures like these? Do occasional seizures involve confusion? The physician must take the patient’s word that the seizures do not involve confusion.

            Often, patients try to sway their physician’s recommendations, and they learn what to say. The DMV could revoke a patient’s driving privileges for six months to two years during which the patient must remain seizure-free. The patients’ reports of their condition may or may not be true. Some patients have gotten their driving licenses back after the DMV-imposed observation period ended. During subsequent follow-up physicians will ask if any seizures have recurred. Not uncommonly the response is, “Would you have to report to the DMV, doctor?” Upon hearing that the physician is required to report they could answer, “No. I’ve been fine.” Not only are they and potential victims in danger, the physician is prevented from making necessary changes in medications for them that could be more effective.

            And, what happens in the remaining forty-four states where epilepsy-reporting is not mandatory? It is the patients’ responsibility to self-report. It is easy to imagine their mental turmoil knowing how much their life would change if they relinquished their driving license. Concerns of potential injury and death to themselves, their passengers and to others, though, are sometimes over-ridden by opting for their personal needs.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. DINGS is his first novel.