|
Leonor Cabral-Lim, M.D., FPNA
Manila Standard, September 28, 2001
Does it exist?
The only available data on prevalence related to epilepsy in the country is a study by Dr. Jose Navarro (PNA Community Survey on Neurological Diseases, Dec.1999) which cites a prevalence of seizures at 230/100,000 population which is half the prevalence rate for stroke at all ages in the same community. This prevalence rate is less than the 440/100,000 population reported in China and other developing countries, which report a prevalence of epilepsy ranging from 500-1000/100,000 population. The lower prevalence rate reported in this study is most likely related to differences in the communities surveyed, the Philippine study conducted in a mixed urban and rural community.
The only other prevalence data available on epilepsy in the country is on Mortality (National Statistics Office 1992-1996) with an average epilepsy mortality prevalence rate of 1.2/100,000.
Most of the data we have on epilepsy in the country are hospital-based data, and this data is mostly from the major training institutions. At the Philippine General Hospital from the period 1996-2000, epilepsy constitute 34.54% of adult outpatient visits or an average of 1904 epilepsy patient visits out of an average of 5611 total outpatient visits/year at the adult Neurology Clinics. At the Philippine Children's Medical Center epilepsy patient visits account for 51.93% of total outpatient visits which translates to an average of 1647 patient visits out of an average 3163 Neurology patient visits/year.
For the year 2000 Seizures rank as the 3rd among the top five Neurology admissions at the Philippine General Hospital and Philippine Children's Medical Center and rank 4th at Makati Medical Center. At the PGH pediatric neurology clinic, MMC and PCMC outpatient neurology clinics Seizures top the list of the outpatient consults, and rank 2nd to stroke at the PGH adult neurology clinic. (Year 2000).
What is the awareness and understanding of epilepsy among patients, families, caregivers and health workers?
A landmark study on Knowledge, Attitudes and Practices on Epilepsy (Salonga, A.M. et al. 1999, 'EPILEPSY EDUCATION PROGRAM: IT'S ROLE IN THE COMPREHENSIVE MANAGEMENT OF CHILDREN WITH EPILEPSY") came up with the ff. significant results:
Awareness of epilepsy - 32% of patients and caregivers and 11% of health workers have not heard or read any information about epilepsy.
Etiology - 17% of health workers and 4% of patients and caregivers believe that epilepsy is contagious and can be transmitted by either marrying, caring for or living with a person with epilepsy or even by witnessing an epileptic attack.
Treatment - surprisingly more parents and caregivers (86%) believe epilepsy can be cured with medications than health workers(68%).A high percentage of all the respondents 54-72% believe epilepsy can be cured with prayer.
What to do during an attack - about half of all the respondents will insert a spoon into the mouth, 1/3-2/3 will fan the patient, a similar number will do nothing and wait. A smaller percentage will massage the patient, blow air on the face, put pressure on the stomach or even bite the patient.
Feelings of relatives towards illness - sadness, depression or worry(66%), surprise or disbelief (60%), fear (56%),blaming oneself(17%),anger (9%)
Activities that a person with epilepsy can do - about half of the respondents believe that a person with epilepsy cannot engage in sports activity or participate in ROTC training; about 2/3 believe persons with epilepsy cannot drive or swim;1/5 believe persons with epilepsy cannot drive.
Schooling, employment, marriage/pregnancy - only 2/3 of parents believe that their child with epilepsy can finish college, be employed, get married and have children. Less than half (42-48%) believe that normal pregnancy and childbirth is possible. Majority of parents would not want their normal children nor themselves to marry a person with epilepsy.
Is epilepsy a burden?
Epilepsy is both an economic and social burden. In our country where medical care is mostly shouldered out of pocket-persons with epilepsy are not only burdened with the cost of medications but also with the cost of medical consults and needed diagnostic tests. The most common limiting factor in our setting in the choice of antiepileptic medications for most of our patients is the cost of the medications. The cheapest available antiepileptic drug is Phenobarbital, which will cost 3.50-5.0 pesos/day; although it is highly effective in controlling seizures, it is not a very ideal drug compared to the other available antiepileptic drugs due to its side effects. However, in situations in which it is the only affordable antiepileptic drug for the patient, its benefit of controlling seizures clearly outweighs its side effects. The other conventional AED's (Carbamazepine, Phenytoin, Valproic Acid) will cost about 35-60 pesos/day, while the new generation AED's ( Gabapentin, Lamotrigine, Topiramate, Oxcarbazepine) will at least cost 50-100 pesos/day or more. Unlike acute medical conditions treatment of epilepsy is long term and financial capability of the patient to adhere to the prescribed drug regimen should be taken into consideration during treatment.
The social burden of epilepsy is not only related to its psychological or emotional impact to the person with epilepsy but also to the stigma attached to it. Persons with epilepsy suffer discrimination in the family, in marriage, in employment, in law, in education and in society. Orteza et al. In an analysis of data gathered from focused group discussions among persons with epilepsy (PLAE LAY FORUM-UP-PGH 2001) came up with the ff. results:
PATIENTS' PERCEPTIONS TOWARDS EPILEPSY
Personal reaction to having epilepsy - fear, worry, uncertainty, anger, confusion, self-pity, neutrality, heightened emotionality
Difficulties encountered - taunting and irritability from others, difficulty in accomplishing tasks, feeling of being abandoned by family members, inability to pursue work and other activities, feeling of being a burden to family
Reaction from others - being overprotective and restrictive, making fun of the person and labeling person as crazy, distancing and fear
Is Epilepsy Care available in the Philippines?
A. Professional Care is available at three levels:
Primary care - these are the primary care physicians consisting of general practitioners, family physicians, pediatricians, internists, rural health physicians
which the patients initially consult
Secondary care - 148 practicing neurologists distributed in the different regions of the country(although majority are concentrated in the NCR; 13 regions in the country have practicing certified neurologist)
Tertiary care - neurologists with special training in the field of epilepsy
B. Epilepsy Services
Primary care clinics - private clinics of primary care physicians, rural health clinics
General neurology clinics - private clinics of neurologists
Epilepsy clinics - epilepsy clinics at the different accredited Neurology training centers (government/private/charity)
Specialized centers - facilities for long term EEG Monitoring, epilepsy surgery
Is there a treatment gap?
Definitely there is a treatment gap (no. of persons with active epilepsy not receiving adequate treatment/total no. of persons with epilepsy), but I do not agree to the reported published estimate of treatment gap in the Philippines(1988) which was 94%.The actual treatment gap in the Philippines is difficult to estimate due to a lot of factors:
As far as statistics is concerned, we only have one prevalence data study, which was conducted in a mixed urban-rural community, while majority of our population live in the rural areas.
We cannot use national gross sales of AED's to estimate truly the no. of persons treated, since there are patients whose medications are bought outside the country or are sent by relatives abroad. Not all the currently available AED's are used as such and have other indications.
We cannot at present estimate the number of persons not being correctly diagnosed and treated.
Taking care of persons with epilepsy in our country for many years and being involved in teaching, training, continuing medical education and lay education programs my observation is that the ff. factors are the most important in the epilepsy treatment gap in the Philippines:
Affordability of AED's (since majority of medical care in our country comes from out of pocket)
Lack of access to an efficient health care delivery system from the grassroots to the experts in the care of persons with epilepsy(since epilepsy is not included in the national health plan) The Department of Health has come out with a National Mental Health Policy last April which includes epilepsy as one of the priorities; this policy has yet to be implemented.
Lack of general awareness that epilepsy is treatable and that medical care is available.
Inadequate training of primary health care providers.
How do we address these issues of "epilepsy treatment gap" and "burden of epilepsy" in our country?
These two important issues are not unique to us, but are currently global concerns. Epilepsy being a universal disorder with no geographical, racial, or social class boundaries. In fact, these are basically the same issues, which are the focus of the recent 2nd phase launch of the Global Campaign Against Epilepsy in February this year.
The Philippine League Against Epilepsy, the national chapter of the ILAE (International League Against Epilepsy) recently launched the " Epilepsy: Out of the Shadows" PHILIPPINES in support of the Global Campaign Against Epilepsy. The "Epilepsy: Out of the Shadows" Global
Campaign Against Epilepsy is the first truly global attempt to bring epilepsy out into the open. It is a joint initiative by the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE) and the World Health Organization (WHO). Their joint mission is to improve the acceptability, treatment, services and prevention of epilepsy worldwide.
The Philippine Campaign will be pursued along the same strategy of the Global Campaign. This strategy includes two parallel and simultaneous tracks
I. To raise general awareness and understanding of epilepsy
II. To support the Department of Health in identifying the needs and promoting education, training, treatment, services, research and prevention nationally.
The "Epilepsy: Out of the Shadows" PHILIPPINES, an initiative by the Philippine League Against Epilepsy will be developed within the already existing national health care system, with the government and private medical sector, public and private sectors, relevant non-governmental organizations, patients, families and their caregivers as partners.
Let us all support the Philippine Campaign and bring "Epilepsy: Out of the Shadows" for persons with epilepsy in our country, majority of whom can lead normal lives and be productive citizens and thus contribute to a better Philippines for all.
Leonor Cabral-Lim, M.D. is currently President of the Philippine League Against Epilepsy.
Campaign Director," Epilepsy: Out of the Shadows" PHILIPPINES
Associate Professor of Neurology, Department of Neurosciences, UP-PGH Medical Center
Attending Neurologist, Philippine General Hospital, Chinese General Hospital, Manila Doctors Hospital
Member, Epilepsy Council, Philippine Neurological Association
Member, World Federation of Neurology Task Force on Health Care Delivery
Member, Commission on Asian and Oceanian Affairs, International League Against Epilepsy
Member, Asian Oceanian Epilepsy Organization
Member, Asian Oceanian Epilepsy Association
Member, Regional Organizing Committee,4th Asian and Oceanian Epilepsy Congress
|
