Citation: Afifi, T., Elessi, K., Samaan, M., Alaqad, A., Elhatal, H. A., & Abu-Lamzi, A. (2019). Management of Epilepsy among Children in the Gaza Strip: A Multicenter Clinical Audit. Dubai Medical Journal, 2(3), 90-98.
Introduction: Seizures are scary phenomena but are quite common especially among children: about 8% will have had at least one seizure by 15 years of age. Most acute seizures in children are brief, terminating spontaneously and do not need any treatment. Seizures that persist beyond 5 min may not stop spontaneously and necessitate comprehensive clinical evaluation and medical care. Seizure control then becomes a matter of urgency for the patient and his family, as the longer the duration of the seizure, the greater the bad effects on body systems especially the brain and the more difficult control is likely to become.
Methods: A retrospective, multicenter clinical audit was undertaken simultaneously at the three largest centers for epilepsy management in Gaza. A total of 190 medical records were included in our audit from January 1, 2017, to April 30, 2018.
Aims and Objectives: Our audit aims to evaluate the care provided for patients with epilepsy from diagnosis to treatment and follow-up and to compare it against the latest National Institute for Health and Care Excellence (2017) guidelines and AACC (American Association for Clinical Chemistry) (January 7, 2018).
Results: Among 190 reviewed medical records, 61% patients were males and the median age was 9 ranging from 6 to 13 years. 31.5% (n = 60) of cases suffered from various comorbidities. The overall adherence of health care professionals to audit standards was moderate. There was severe dearth of information in the medical records. Most records (n = 147, 77.4%) did not include the seizure type, frequency, and duration. Drug therapy was inconsistent with seizure type in 16 cases (8.4%). Investigations were underutilized generally. There were marked differences in the practice among health care centers.
Conclusion: The vast majority of files (n = 138, 72.6%) suffered from poor documentation of seizure type, frequency, and duration which needs to be improved. Drug prescription was inconsistent and highly variable and dependent on the treating doctor’s memory and diligence. Moreover, electroencephalogram, electrocardiogram, and drug level testing were highly suboptimal. Health professionals should modify and adopt the AACC recommendations to improve diagnostic and therapeutic service and reduce potential complications and sufferings of epileptic patients.
Epilepsy is a common and serious neurological disorder in childhood. In reality it is not a single disease but comprises a range of electroclinical phenotypes that result from many underlying disorders. Children with epilepsy differ from adults not only in the clinical manifestations of their seizures, but also in the presence of unique electroencephalogram (EEG) patterns, etiologies, and response to anti-seizure drugs . They are more prone to seizures, but seizures are more about to disappear as the child grows. The management of the care of children with epilepsy has important implications for all aspects of their daily lives, especially daily activities such as bathing, vocational and leisure pursuits. There are areas of continuing concern with regard to therapy and compliance. Previous studies [2, 3] have shown that there is great potential for improving the management of these children, with particular reference to accurate diagnosis, appropriate therapeutic intervention, and well-documented, careful, ongoing support.
There has been long-standing concern regarding misdiagnosis and quality of management. Thus, this paper reflects on the current practice and further to improve the care delivered in Gaza Strip health care centers.
Additionally, through this work we wanted (I) to document the seizure frequency and appropriateness of daily therapy to aid patient compliance, (II) to ascertain the laboratory tests requested and their frequencies, and (III) to propose strategies to improve these aspects of epileptic care.
Materials and Methods
This study was carried out in the three largest centers for epilepsy management in the Gaza Strip, namely: European Gaza Hospital, Nasser Medical Complex, and Rantisi Pediatric Hospital. The study involved the medical records of 190 children seen at a pediatric neurology department during the period from January 1, 2017, to April 30, 2018.
We chose a clinically representative rather than a randomized controlled sample as the present study aimed to evaluate the performance of the health care professionals.
Medical records with insufficient information on the child, or when laboratory results or prescribed drug lists were missed were excluded from the study since the assessment depends largely on these items.
Principles for the management of these patients were devised from two sources with advice from two neurologists. Validated international standards used for this study were chosen from these principles. Through an audit process, the assessed aspects of care were: (1) seizure documentation, duration and frequency, (2) requested investigations which included imaging studies, blood tests and chemistry, and (3) treatment.
The latest National Institute for Health and Care Excellence (NICE) (2018) guidelines and American Association for Clinical Chemistry (AACC) (2017) were followed in this audit [4, 5].
Laboratory and nonlaboratory tests are used to diagnose and monitor epilepsy, to determine what kinds of seizures a child is having, to identify underlying conditions such as toxins, infections or fever in children that may be causing seizures, and to distinguish epilepsy from conditions such as fainting that may cause some of the same symptoms.
A medical history, input from the patient, and input from family members who have witnessed the seizures are important parts of the diagnostic process. Someone with epilepsy may remember a strange smell, an aura, and/or sensations that precede a seizure but may not remember what has happened during the seizure itself. Depending upon the signs and frequency of a child’s seizures, it may take some time to determine the proper diagnosis. Table 1 demonstrates the best available recommendations for practice.
Table 1. Key recommendations for practice [6–16]
Basis of recommendations
|Management of pediatric status epilepticus||Expert opinion; not systematic review||
|Seizures including partial seizures (simple complex and secondarily generalized), and generalized tonic and/or clonic seizures||Italian League against Epilepsy systematic evidence-based review||
|Diagnostic assessment of child with status epilepticus||Evidence-based review by American Academy of Neurology and Child Neurology Society||
|Treatment of status||Finnish Neurologic Society||
|Generalized convulsive status epilepticus in children||Canadian Paediatric Society providing care guidelines while acknowledging there are insufficient data to guide care. Pragmatic expert advice||
|Generalized convulsive status epilepticus||Expert opinion noting there are no nationally recognized specific protocols in North America||
|Treatment of convulsive status epilepticus||Italian League against Epilepsy systematic evidence-based review||
|Multi-Disciplinary Group for the Management of Status Epilepticus in Children in India||
|Monitoring oxygen saturations, providing supplemental oxygen, evaluation and treatment of acute seizures||World Health Organization’s Paediatric Emergency Triage, Assessment and Treatment Group||
|Compared anticonvulsant treatments for convulsive status epilepticus||Evidence-based guidelines from American Epilepsy Society||
|Management of status epilepticus||Expert panel developed consensus; no evidence ratings given||
AED, antiepileptic drugs; ABC, airway, breathing and circulation; LP, lumbar puncture; RCT, randomized controlled trial; IO, intraosseous
Five medical students were trained for 1 week on study protocol, tools and data collection techniques of the study. Data were collected using a self-designed questionnaire based on the NICE and AACC guidelines. The survey tool encompassed questions related to demography and socioeconomy, presence of comorbidities, diagnostic information and treatment prescribed for the case. The data collection sheet was revised after conducting a pilot survey among 15 medical records. The data were collected retrospectively choosing the first completed files, which contained the adequate information we needed. The study focused on all known children with epilepsy in the three centers.
Definitions of Variables
Children were selected for this study as younger than 15 years old. Medical records were chosen as they had the ICD number G40 which indicates the diagnosis of epilepsy.
The collected data were initially entered to Microsoft Excel. Then, data were analyzed by SPSS version 23. Frequency distributions and percentages were computed for all the variables.
Ethical clearance was obtained from the Directorate General of Human Resources Development at the Ministry of Health, State of Palestine. Written and verbal consents were gained form health care centers’ heads to enable us to review medical records. Study objectives, data collection procedures, benefits and risks of the study, confidentiality, and anticipated use of the results were explained to the research committee in the ministry in detail before executing our work.
Our study included the revision of medical records of 190 children diagnosed with epilepsy in three hospitals in the Gaza Strip. Based on the analysis of the whole cohort, 60.5% (n = 115) were males, and the median age was 9 ranging from 6 to 13 years old; however, the median age at which the first seizure appeared was 5 years. The children involved in the study suffered from many comorbidities, 54% (n = 103) of cases suffered from pneumonia, asthma and other etiological conditions of epilepsy. Regarding seizure type, 12.5% of cases (n = 24) had tonic-clonic seizure, 3.5% (n = 7) had febrile seizure, 2.5% (n = 5) had generalized tonic seizure, and 3.5% (n = 7) had other types. On the other hand, 77.5% of cases (n = 147) had no documentation regarding seizure type. Furthermore, the seizure frequency was not documented at all. Table 2 summarizes the results for each center.
Table 2. Characteristics of study subjects and distribution of comorbidities
EGH, % (n)
NMC, % (n)
RPH, % (n)
Total, % (n)
|Total number of cases||23.5 (45)||34 (65)||42.5 (80)||100.0 (190)|
|Generalized tonic||4.5 (2)||3.75 (3)||2.5 (5)|
|Tonic-clonic||18 (8)||23 (15)||1.25 (1)||12.5 (24)|
|Myoclonic||1.5 (1)||1.25 (1)||1.05 (2)|
|Febrile seizure||2 (1)||9 (6)||3.5 (7)|
|Focal seizure||4.5 (2)||1.05 (2)|
|Absence seizure||2 (1)||0.5 (1)|
|Status epilepticus||3 (2)||1.05 (2)|
|Not documented||69 (31)||63 (41)||93.75 (75)||77.5 (147)|
|Comorbidities and etiological conditions|
|Pneumonia||29 (13)||18.75 (15)||15.0 (28)|
|Sanjad-Sakadi syndrome||4.5 (2)||1.05 (2)|
|Cerebral palsy||82 (37)||1.5 (1)||1.25 (1)||20.5 (39)|
|Celiac disease||2 (1)||0.5 (1)|
|Asthma||4.5 (2)||3.75 (3)||2.5 (5)|
|Angelman syndrome||2 (1)||0.5 (1)|
|Brain atrophy||11%(5)||6.% (4)||4.5 (9)|
|Hepatitis A||2 (1)||0.5 (1)|
|Familial Mediterranean fever||2 (1)||0.5 (1)|
|Cystic fibrosis||2 (1)||0.5 (1)|
|Acute bronchiolitis||5 (3)||1.2 (1)||2.0 (4)|
|Down syndrome||2.5 (2)||1.05 (2)|
|Immunodeficiency||1.25 (1)||1.05 (2)|
|Neurodegenerative disease||1.25 (1)||0.5 (1)|
One child may have more than one comorbidity. Empty cells mean none or zero. EGH, European Gaza Hospital; NMC, Nasser Medical Complex; RPH, Rantisi Pediatric Hospital. For percentages presented in the field under each hospital, the number is divided by the total of the hospital. For percentages in the total column, the numbers are divided by 190.
EEG, the primary diagnostic tool for epilepsy, was done in 49 out of 190 patients (25.7%). NICE guidelines recom- mend doing EEG for all epileptic patients to determine the type of seizure. An electrocardiogram (ECG) was investigated in 7% of patients (n = 13) only; the NICE guideline recommends that a standard 12-lead ECG should be done in all patients presenting with suspected seizure. Drug levels have been monitored in only 19.5% of cases (n = 37). According to the AACC guideline, clotting tests must be studied in patients on valproic acid. In spite of that, only 14 (7.4%) patients had been tested. Figure 1 shows how frequently investigations were requested in the actual practice.
Fig. 1. Percentages of requested tests.
Interestingly, 25% of cases (n = 48) were under no therapy. However, 42.5% (n = 81) were under polytherapy and 32% (n = 61) were under monotherapy (Fig. 2). Valproic acid was the most prescribed drug. It was prescribed in 36% of cases (n = 67), followed by phenobarbital, phenytoin, and diazepam; they were collectively prescribed in 62% of cases (n = 118). By contrast, the drug was not matched with the type of seizure in 8.5% of cases as compared to the NICE guidelines. Drug levels are of important concern in epilepsy patients. However, only 19.5% of cases (n = 37) had their drug level being monitored during therapy. In summary, Figure 3 demonstrates the number of drug prescriptions in the practice. It is well observed in Figure 2 that health care providers depended largely on a combination between antiepileptic drugs. Most of these combinations were between phenobarbital and valproic acid in 31.5% of cases (n = 60) and between clonazepam and diazepam in 11% of patients. As previously mentioned, as most children suffered from various comorbidities, they were admitted several times to the hospital. As a result, they were also prescribed drugs for their conditions. Antibiotics were on the top of the list followed by ranitidine and nonsteroidal anti-inflammatory drugs.
Fig. 2. Distribution of drug therapy
Fig. 3. Number of antiepileptic drug prescriptions. One patient may be prescribed more than one drug.
Adherence to Guidelines
It is clearly observed that the practice of health care providers in Gaza Strip centers is not highly committed to the guidelines. The practice varied among the three centers in almost all categories of the standards. However, there were some mutual deficits in the practice in all centers. For example, all files suffered from poor documentation of basic information such as seizure type, seizure frequency, and duration. On the other hand, the centers differed in drug prescriptions and combinations. Overall, their adherence to the adopted standards was found only in 29% of cases (n = 55).
To the best of our knowledge, this is the first audit in Palestine concerned with epilepsy in children. However, there is no reliable statistics regarding the incidence of epilepsy among children. Here, our work had some criteria for selecting the medical records, and we did not include every single record of epileptic patients. The information we sought to evaluate in the medical records was half-heartedly demonstrated. This was the barrier as we did not include all patient files.
It is well recognized that documentation of seizure type, frequency, and duration is poor. The absence of documentation suggests that epilepsy was not the focus of the consultation. The reasons for this are likely to have been that the patients were consulting for reasons other than epilepsy, that their condition was stable, or that there was not enough time available during the consultation. It may be that neither patients nor doctors wish to draw attention to this stigmatized condition.
As mentioned above, most patients suffered from other comorbidities. Moreover, investigations are underutilized, and appropriate laboratory tests as well as imaging studies were not requested occasionally. In addition, the unavailability of some lab tests and lab technicians had a great impact on utilization of these facilities.
Drug prescription was inconsistent and highly variable and dependent on the treating doctor’s memory and diligence. There is large dependence on some medications due to their availability. On the other hand, some medications should be prescribed, but the health system lack them, or the family of the child cannot afford them. As the diagnosis of the epilepsy type is not accurate, the treatment plan will not be convenient. And the treatment period is prolonged without noticeable development in the case condition. However, health care providers were aware enough in changing the medication and about drug combination. Thus, we did not record any complicated condition.
It is clearly obvious that the practice in Gaza Strip centers is suboptimal. So, as a result of this audit, further developments are planned. Successive audits and close monitoring of the practice will dramatically lead to better documentation and proper use of investigations. This in turn will fulfill the gap of incorrect diagnosis. This eventually will aid in suitable drug prescriptions.
During our work, we observed marked variation in the practice among the centers and this is due to the lack of agreement between health care providers on the best standards to follow. However, the measures in the previous paragraph could remedy this gap.
Studies on children with epilepsy in regional countries have provided some useful statistics. A study in Saudi Arabia  found the prevalence rate of epilepsy in children is 6.54/1,000 in 2001 by door-to-door survey. The study also reported that perinatal and inherited factors
are the predominant causes of symptomatic epilepsy. Another study conducted in Sudan as a low-resource country as the Gaza strip concluded that epilepsy continues to be a major public health problem with a considerable gap in its treatment. The study also added there is a need for rational use of investigation when required. Furthermore, the study addressed the importance of public knowledge and attitude improvement . The previous recommendations are similar to those of our study.
This study shows that annual review and seizure frequency documentation are required in order to improve the medical records, but alterations in drug therapy are more difficult. Barriers to change exist, but it is proposed that they can be overcome by successive audits based on a primary care team approach with close collaboration with a neurologist. Health professionals should modify and adopt the AACC recommendations to improve diagnostic and therapeutic service and reduce potential complications and sufferings of epileptic patients.
Epilepsy management in Gaza Strip centers is clearly suboptimal compared to internationally validated practices particularly in the fields of completing documentation and the proper use of investigations and medications. A specialized epilepsy clinic should be the focal point for acute and follow-up care. Traditionally, the main player in this care is the epilepsy experts; however, overall care improvement requires better collaboration between neurologists and other general practitioners who can make a considerable contribution to continued patients care. The authors suggest that a local protocol of management of epilepsy should be drafted based on validated guidelines. It is also suggested that local epilepsy registers should be created to enable long-term surveillance and research.
Finally, a refreshing course on the management of epilepsy has to be conducted for concerned staff followed by a successive audit to measure improvements.
- Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Estimation of the burden of active and life-time epilepsy: a me- ta-analytic approach. Epilepsia. 2010 May; 51(5):883–90.
- Brown S, Betts T, Chadwick D, Hall B, Shor- von S, Wallace S. An epilepsy needs docu- Seizure. 1993 Jun;2(2):91–103.
- Cooper GL, Huitson An audit of the management of patients with epilepsy in thirty general practices. J R Coll Gen Pract. 1986 May;36(286):204–8.
- Epilepsy: diagnosis and management. April 2018 [cited Jan 2019]. Available from: https:// nice.org.uk/guidance/cg137.
- Epilepsy. October 26, 2017 [cited Jan 2019]. Available from: https://labtestsonline.org/ conditions/epilepsy.
- Glauser T, Shinnar S, Gloss D, Alldredge B, Arya R, Bainbridge J, et Evidence-based guideline: treatment of convulsive status epi- lepticus in children and adults: report of the Guideline Committee of the American Epi- lepsy Society. Epilepsy Curr. 2016 Jan-Feb; 16(1):48–61.
- Kälviäinen R, Eriksson K, Parviainen Re- fractory generalised convulsive status epilep- ticus : a guide to treatment. CNS Drugs. 2005; 19(9):759–68.
- Beghi E, De Maria G, Gobbi G, Veneselli Diagnosis and treatment of the first epileptic seizure: guidelines of the Italian League against Epilepsy. Epilepsia. 2006;47(s5 Suppl 5):2–8.
- Riviello JJ Jr, Ashwal S, Hirtz D, Glauser T, Ballaban-Gil K, Kelley K, et al.; American Academy of Neurology Subcommittee; Practice Committee of the Child Neurology Soci-Practice parameter: diagnostic assessment of the child with status epilepticus (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society. Neurology. 2006 Nov;67(9):1542–50.
- Kälviäinen R, Eriksson K, Häppölä O, Kerän- en T, Kurola J, Kuusela AL, et ; Suomalaisen Lääkäriseuran Duodecimin; Suomen Lasten- neurologinen Yhdistys RY:n; Suomen Neu- rologinen Yhdistys RY:n Asettama Työryh- mä. [Update on current care guidelines. The treatment of status epilepticus]. Duodecim. 2009;125(22):2469–71. In Finnish.
- Friedman Emergency management of the paediatric patient with generalized convulsive status epilepticus. Paediatr Child Health. 2011 Feb;16(2):91–104.
- Shearer P, Riviello J. Generalized convulsive status epilepticus in adults and children: treatment guidelines and Emerg Med Clin North Am. 2011 Feb;29(1):51–64.
- Capovilla G, Beccaria F, Beghi E, Minicucci F, Sartori S, Vecchi M. Treatment of convulsive status epilepticus in childhood: recommendations of the Italian League Against Epilepsy. Epilepsia. 2013 Oct;54 Suppl 7:23–34.
- Mishra D, Sharma S, Sankhyan N, Konanki R, Kamate M, Kanhere S, et ; Multi-disciplin- ary Group on Management of Status Epilepticus in Children in India. Consensus guidelines on management of childhood convulsive status epilepticus. Indian Pediatr. 2014 Dec; 51(12):975–90.
- Updates on paediatric emergency triage, assessment and treatment: care of critically ill Geneva: World Health Organiza- tion; 2016.
- Bashiri FA, Hamad MH, Amer YS, Abouelkheir MM, Mohamed S, Kentab AY, et Management of convulsive status epilepti- cus in children: an adapted clinical practice guideline for pediatricians in Saudi Arabia. Neurosciences (Riyadh). 2017 Apr; 22(2): 146–55.
- Al Rajeh S, Awada A, Bademosi O, Ogunniyi A. The prevalence of epilepsy and other seizure disorders in an Arab population: a community-based study. Seizure. 2001 Sep;10(6): 410–4.
- Eltahir Babiker Managing childhood epilepsy in a resource-limited setting: A pragmatic approach. Sudan J Paediatr. 2015;15(1): 9–20.