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October2013 Vol.50 Issue:      4 Table of Contents
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Silent Epilepsy Patients in Mansoura Neurology Outpatient Clinic

Ebrahim E. Elmenshawy, Hassan H. Salama, Mohammad S. Shehab-Eldeen

Department of Neurology, Mansoura University; Egypt



ABSTRACT

Background: Epilepsy is a disease with incidence throughout life and is commonly self limited with high proportion of patients eventually enter a long term remission and stop medication. However, a lot of patients remain silent about their disease and its treatment. Objective: This study was to assess the magnitude of silent epileptic patients in Mansoura University Neurology outpatient clinic. Methods: Consecutive patients attending the clinic were subject for structured questionnaire regarding their seizures, antiepileptic drugs as a method of treatment and about their adherence to them. Results: 248 patients were recruited. Only seizure freedom was achieved in 21% of them. Non-adherence to medication by stop taking drugs in 37%, dose increase or decrease in 20% or by trying other ways to control seizure like Hegamah and reading Quran were common manifestation of patient silence. Lack of knowledge, impaired cognition and low expectation about therapy were also contributing to patient silence. Conclusion: Silent epilepsy patients are true challenge in epilepsy management that need to be addressed in neurology clinics. [Egypt J Neurol Psychiat Neurosurg.  2013; 50(4): 437-440]

Key Words:
  Epilepsy, Silent patients, neurology clinic

Correspondence to Ebrahim Elmenshawy, Neurology Department, Mansoura University, Egypt.Tel.: +201005447704    e-mail: menshawy@mans.edu.eg




 


INTRODUCTION

 

Epileptology has changed dramatically over the last decades. Epilepsy outcome has evolved from only seizure control to better quality of life including less antiepileptic drug adverse events (AEDAE). Epilepsy care has been stratified from primary, secondary to tertiary care centers where epileptologist take care of patients usually referred for uncontrolled epilepsy. Effective treatment of epilepsy demands open, reciprocal communication between patients and physicians1,2. Patients increasingly need physicians to be both educators and partners in helping them reach the goal of therapy and physicians rely on patients to be forthright about compliance, seizure frequency, and adverse events1,3. Unfortunately, a significant number of patients remain silent about these crucial issues3,4.

The aim of this study was to assess the magnitude of silent epilepsy patient at neurology outpatient clinic in Mansoura University Hospital and its effect on seizure freedom.

 

PATIENTS AND METHODS

 

Consecutive epilepsy patients, having seizures for more than two years,attending our neurology clinic, were subjected to structured questionnaire addressing their knowledge about epilepsy & its treatment with antiepileptic drugs (AEDs):

·                  Questions about seizures:

o    Have your doctor’s mentioned that you have epilepsy?

o    What does seizure means to you?

o    How many seizures did you have last month?

o    How many seizures did you have in the last 3 months?

·          Questions about AEDs as a treatment for epilepsy:

o    What are the different means you used to treat yourself from epilepsy?

o    Do you use AEDs now and what are they?

o    Do you believe that treatment with AED will eventually improve the disease & give up the medications?

·          Questions about AED compliance and drug-drug interaction:

o    Have you stopped taking the drug in the last 3 months & why?

o    Have you changed the drug dose (increase or decrease) without consulting your doctor & why?

o    Have you talked with your doctor about AEDAE?

o    Have you used drugs other than your AED during last month & last 3 months?

o    Did you inform your neurologist or other doctor about your disease and AED?

o    Do you forget & if that will affect your clinic visit?

 

The demographic, clinical, and technical data were collected using a data collection form and entered into a computerized database before statistical analysis. Continuous variables were compared using analysis of variance for repeated measures. P-value less than 0.05 were considered statistically significant. All data were expressed as mean ± standard deviation (SD) or patient’s number (n) and percentage (%) as appropriate.

The study has been approved by the departmental council of Neurology department, Mansoura University.

 

RESULTS

 

A total of 248 patients were recruited; 157 male and 91 female with a mean age of 28.8 ± 11.5 yrs. Doctors have told 83% of patients that they have epilepsy while the rest don't remember. For 75% of patients, seizure means convulsion with or without coma in 50% of them while 15% said seizure is a behavioral defect, short period of amnesia or don't know. Seizure freedom was described in only 21% of the studied patients. The number of seizures reported during the last month and three months are described in figures 1, 2&3.

60% of patients believe that AED are able to cure their epilepsy while 33% doesn't & 7% don't know. 24% of patients have used other ways to control their seizures beside their AEDs either alone or in combination (figure 4). Most of the patients were using old AED either alone or in combination (carbamazepine: 110, sodium valproate:  91 & phenytoin: 82) while few were using new AED (lamotrigine: 10, topiramate: 10 &levetiracetam: 4). 20% of patients didn't know when to stop taking their AEDs while 10% & 70%  thought they can stop taking their AEDs in months and after years respectively.

During the last 3 months,37% of patients admitted to have stopped their AEDs. The reasons are demonstrated in figure 5. 20% of patients have increased or decreased the dose of their AEDs without their doctor's consultation.19% of patients have used drugs other than their AEDs during the last 3 months and 21% don't remember. Those who used drugs were more likely to inform the other doctor and not their neurologist about being epileptic and using AEDs (P < 0.0001).

65% of patients talked with their neurologist about AED adverse events (AEDAE) while the rest either didn't talk or don't remember. All patients attend the outpatient clinic for drug refill while only 27% of patients come also for follow up of their epileptic condition. Although 43% of patients complained of forgetfulness, only 14% of that forgetfulness had affected their clinic visits.


 

 

 

 

Figure 1. 30% of patients reported no seizure during the last month, while 28% experienced single seizure.

Figure 2. Only 21% were able to maintain seizure freedom while 36% experienced 3 seizures or less

Figure 3. The correlation between the number of seizure during last month and last 3 months. The no seizure and one seizure/ month curves were highly dynamic. As the time goes, patients are less likely to be seizure free with corresponding increase of less than 4 seizures/month. Those having 4 or more seizures/month were nearly constant during the last month and 3 months respectively.

Figure 4. 24% of patients have used other methods to treat their seizure sometime during their treatment.

Figure 5. Medication cost and forgetfulness were the most common reasons that led patients stop taking their AEDs.

 

 


DISCUSSION

 

Epilepsy is a chronic disease that necessitates treatment with AEDs which are potentially hazardous. Patients before starting their treatment should have enough information about their illness, the importance of compliance to AEDs and seizure freedom and to have a secured supply of drug refill in order to achieve eventually a better epilepsy outcome. Neurology outpatient clinic is a suitable place for direct communication between patients and neurologist to achieve optimum diagnosis and management. Patients may not intentionally be silent about their disease. Most patients consider epilepsy as generalized convulsive tonic-clonic movement (GTCS) and not aware of other seizure forms as in our study where only 15% consider other forms of seizure that may imply partial onset or myoclonic forms. Only 21% achieved seizure freedom which is far behind the boundary of 40-60% response rate established by ILAE for AED efficacy as initial monotherapy for epileptic seizure5. In this study, patients who are seizure free during the last month dropped from 30% to 21% and appear to be caused by single seizure / month that were increasing over the same duration, incriminating them as breakthrough seizures. Carbamazepine, valproate and phenytoin were the main drugs used by patients in this study. This was not surprising as Carbamazepine and phenytoin are established as efficacious as initial treatment for adults with newly diagnosed partial epilepsy (level A) and Valproate is probably efficacious as initial monotherapy for adults with newly diagnosed or untreated partial-onset seizures (level B) and all of them have class C efficacy against adults with GTCS5. However drugs like topiramate and lamotrigine have similar efficacy and better side effect profile than old medication however they have been used by a minority in this case series. In a survey of more than 500 epilepsy patients, 27% admitted changing their medication dosage without informing their physician in order to avoid side effects4. 19% of the studied patients admitted to have done that. Moreover, 37% stopped their medication mostly because of the cost or forgetfulness. Fifty-eight percent of children with newly diagnosed epilepsy demonstrated persistent nonadherance during the first 6 months of therapy and lower socioeconomic status was the sole predictor6. Also, only about half of 664 respondents in another study said they had ever discussed side effects with their physician7. In our study, 35% did the same.

Lack of knowledge, impaired judgment or cognition, fear and low expectation of therapy may all contribute to this silence. This has been met in this case series when only 60% believe in their AED to treat their seizure while 25 % used other ways to get rid of their seizures. The convulsive seizure, the peculiar behaviors that may accompany complex-partial seizures, and the psychic phenomenon that often comprise seizure auras have fuelled epilepsy stigmatization and the use of religious or spiritual means for its treatment in developing world8. Also 43% of patients complained of forgetfulness that not only affected taking their medication but also affected their outpatient clinic attendance for follow up and drug refill.

This study is a truly practical one to measure the standard of care offered to epilepsy patients in neurology clinics. Identifying the obstacles against optimum outcome is the initial step for better care. This can be seen if we applied a more objective system for patients in the clinic and measure its advantages and disadvantages in managing such problem which might be an idea of future research.

 

[Disclosure: Authors report no conflict of interest]

 

REFERENCES

 

1.        Schacter SC, Yerby MS. Management of epilepsy: pharmacologic therapy and quality- of- life issues. Postgrad Med. 1997; 101: 133-53

2.        Smithon WH, Hukins D, Jones L. How general practice can help improve care of people with neurological conditions: a qualitative study. Prim Health Care Res Dev. 2006; 7: 201-10

3.        Dalrymple J, Appleby J. Cross sectional study of reporting of epileptic seizures to general practitioners. Br Med J. 2000; 320: 94-7

4.        Wheless JW: Intractable epilepsy: a survey of patients and caregivers. Epilepsy Behav. 2006; 8: 756-64

5.        Glauser T, Ben-Menachem E, Bourgeois B, Cnaan A, Chadwick D, Guerreiro C, Kalviainen R, et al. ILAE treatment guidelines: Evidence-based analysis of antiepileptic drug efficacy and effectiveness as initial monotherapy for epileptic seizures and syndromes.Epilepsia. 2006; 47(7): 1094-120.

6.        Modi AC, Rausch JR, Glauser T. patterns of nonadherance to antiepileptic drug therapy in children with newly diagnosed epilepsy. JAMA. 2011; 305(16): 1669-76

7.        Buck D, Jacoby A, Baker GA, Graham-Jones S, Chadwick DW. Patients' experiences of and satisfaction with care for their epilepsy. Epilepsia.1996; 37: 841-9

8.        Prus N, Grant AC: Patients beliefs about epilepsy and brain surgery in a multi-cultural urban population. Epilepsy Behav. 2010; 17(1): 46.


 

 

الملخص العربى

 

خلفية البحث: مرض الصرع يصيب الإنسان في جميع مراحل الحياة وفي كثير من الأحيان يستجيب المرض للعلاج ويتوقف المريض عن تلقي العلاج. علي الرغم من ذلك، كثير من المرضي يؤثر الصمت ولا يتحدث مع طبيبه عن طبيعة المرض، الأدوية مضادات الصرع، آثارها الجانبية وطريقة تلقيها. الهدف من البحث: دراسة لحجم مشكلة صمت المرضي عن الحديث عن المرض وعلاجه وتأثيره علي نتيجة العلاج. المرضي وطرق البحث:  تم سؤال المرضي المترددين علي العيادة الخارجية لقسم طب المخ والأعصاب ويعانون من مرض الصرع مجموعة من الأسئلة الاسترشادية عن النوبات الصرعية وكيفية العلاج. النتائج: ضمت الدراسة مئتين وثمانية وأربعين مريضا بالصرع. نجحت الأدوية مضادات الصرع في السيطرة علي النوبات في ٢١٪ من المرضي. أخذ صمت المرضي صور مختلفة أهمها عدم الالتزام بالطريقة المثلي للأدوية مثل التوقف عن أخذها في ٣٧٪، تقليل أو زيادة الجرعة في ٢٠٪ أو باتخاذ طرق مجتمعيه لعلاج النوبات مثل الحجامة أو قراءة القرآن. كما ساهم نقص المعلومات عن المرض وعلاجه، النسيان، وعدم ثقة المريض في العلاج في زيادة صمت المرضي. الخلاصة: صمت مرضي الصرع عن التفاعل مع الأطباء بخصوص المرض وعلاجه يمثل تحدي كبير في إتمام علاج هؤلاء المرضي علي الصورة المرضية.



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