Clinico-etiological profile of children with seizures at a tertiary care centre in rural area in North India with special emphasis on “treatment gap”: a retrospective observational study

INTRODUCTION

Seizure is one of the common neurological disorders present in children. At least 4 to 10 % of children experience at least one episode of seizure with highest incidence in first three years of life.¹ Seizures not only have adverse physical impact but also significant mental and social impact on patient and their families. Neonatal seizures, febrile convulsions, meningitis, viral encephalitis, neurocysticercosis, cerebral malaria, and epilepsy are some of the common causes of seizures in children in developing countries.^2,3 There are not many studies on clinico etiologic profile of childhood seizure in rural area of a developing country using standard revised definitions of seizure classification.

AEDs are administered on an individual case to case basis according to seizure type, co morbidities, patient’s convenience, adverse effects and financial capacities.4 Most of the children show excellent response to treatment with studies showing that two-thirds of children with epilepsy become seizure free for longer than 3 to 5 years, and successful weaning is achieved in nearly half of all patients.⁵ Improper treatment leads to recurrence of seizures, hospital admissions, poor outcome and increased mortality.⁶ Despite this; there is huge

“Treatment gap” due to various avoidable factors. Up to 60% of children with epilepsy have exhibited non adherence to treatment.⁷ However, there is paucity of studies highlighting the treatment gap in childhood seizures in rural India. In view of these facts this study was conducted to identify the clinical and etiological profile of childhood seizures and identify the extent and causes of treatment gap.

METHODS

This was a retrospective hospital based observational study conducted in the outpatient department (OPD) of department of pediatrics at all India institute of medical sciences, Raebareli, a newly established tertiary care hospital situated in a rural area in North India. OPD records of all patients attending the hospital over a period of 19 months from September 2018 to March 2020 were analyzed. Records of all the children with age from 2 month to 18 years presenting to pediatrics OPD with history of seizures in past at least 3 months prior were used in the study. These patients had attended the OPD either for completion of treatment, post seizure complication or breakthrough seizure. As the institute did not have admission facility during the study period, children with acute seizures were referred to hospital with inpatient facilities. Babies presenting within the first two months of life, children with first episode of acute seizure, those with seizure onset 3 months prior to coming to OPD were excluded from study. Details about demographic profile, onset, duration, morphology of seizure, etiological factors, family history, investigation findings, source and duration of treatment given, medications required to control seizures and reasons for inadequate treatment was collected. The data obtained was entered in Microsoft excel. Seizures were classified according to international league of epilepsy classification and terminology.⁸ Epilepsy was defined as presence for more than one unprovoked seizure episode 24 hours apart or one unprovoked seizure and probability of future recurrence.⁹ Treatment gap was defined as patients with active seizure not being on any treatment or receiving inadequate therapy in the form of either taking treatment other than medically recommended, improper execution/ it’s discontinuation before prescribed duration.

Statistical analysis was performed using the SPSS, version 23 (IBM, Chicago, USA). Continuous data were presented using mean ± standard deviation, while categorical data presented in frequency (%). Chi square test was used to analyze association between categorical factors with treatment gap. p<0.05 was considered statistically significant.

RESULTS

A total of 4220 children had attended the pediatric OPD in the study period for the first time of which 295 (7%) had either acute seizure or history of seizure in past. Of these 46 children were excluded. Final analysis of 249 children was done (Figure 1).

Table 1 depicts clinical characteristics of children. The mean (SD) age at presentation was 9.2 (4.6) years and the mean (SD) age at onset was 7.6 (4.7) years. A female preponderance was observed (52%). The 14% children had positive family history of epilepsy. Clinico-etiological profile of seizures is presented in Table 2. Generalized tonic-clonic seizures were the most frequent type of seizure (62.2%), followed by focal seizures with intact awareness (16.06%). Neurocysticercosis was the most common etiology (45.8 %) f/b unknown cause (21.7%) f/b perinatal hypoxic brain injury (13.2%). Neuroimaging was done in 240 cases with abnormal findings in 190 cases. Treatment profile of patients is expressed in Table 3. Treatment gap expressed as proportion of children with incomplete, inadequate or no treatment of the total number of eligible children was 65.86%. 95 patients didn’t take any form of treatment. Allopathic treatment solely was taken by 130 patients. Three most common reasons for inadequate treatment were faith on local spiritual babas for its cure (n=46), belief that it will self-resolve and is not a serious problem (n=43), and response not as expected (n=38). 58.6 % children were taken to local spiritual gurus/tantriks for cure. Amongst children who were given AED (n=142), 86.6% were on monotherapy and 13.3% on polytherapy. Carbamazepine (n=59), valproate (n=50) were most frequently prescribed drugs. Table 4 shows the treatment gap and its association with various clinical, etiological characteristics. Children with epilepsy were more likely to have inadequate treatment with p<0.00005.

DISCUSSION

The mean age of study population was 9.2 (4.6) years. The mean age at onset of seizure was 7.6 (4.7) years. The 52% of patients in study were female with F:M ratio of 1.1:1. Most of the studies have seen male preponderance.¹⁰ 71% children in our study had Generalized seizures (71.5%) with generalized tonic clonic being the most predominant type (62.24%). This is consistent with other studies in which majority had generalized seizures.^11,12 CNS infections were the most common cause of seizures (54%) f/b unknown cause (21.7%) f/b structural cause (16.4%). Neurocysticercosis (NCC) (45.8%) was the most predominant individual etiology. Indian studies have reported NCC as common etiology especially in Northern India.^13,14 The 74% children progressed to epilepsy. EEG was done in 25% cases of which 85% had abnormal EEG. This is lower than a study were EEG was done in 61.66% of the cases with abnormal findings seen in 68.91%.¹⁵ Lower values 3 in our study are probably due to fact that many children had landed up with tantriks or quacks. Neuroimaging was done in 96% of with abnormal findings in 79% cases.

The 43% children were not started on any antiepileptic drug and 23 % had initiated but didn’t complete treatment or had improper execution which suggests that there was treatment gap of 66%. The 84% patients had treatment gap in an epidemiological study from Egypt.¹⁶ 32% patients were dis continuers in a large retrospective cohort study from Pakistan.¹⁷ Lack of public awareness, social stigma has been cited as common causes of treatment gap in resource limited settings.¹⁸ Three most common reasons for inadequate treatment were trust on local spiritual babas for its cure (28%).¹ belief that the disease will self-resolve especially in cases where there were infrequent seizures (26%), and response not as expected (23%). A review article had rightly mentioned that when patient doesn’t experience immediate adverse effect on stopping medicines, he wrongly concludes that medicines are no longer required.¹⁹ An astonishingly huge percentage of 58% children were taken to tantriks or local babas with the belief that an evil spirit is responsible for the condition. In a cross-sectional study in Sudan, it was found that one third of caregivers of children epilepsy believed that epilepsy was caused by supernatural powers and 40% believed that epilepsy can be cured by spiritual treatment.²⁰ There was no statistically significant difference between those with adequate and inadequate treatment in relation to age, gender, type or etiology of seizure. Those who progressed to epilepsy were more likely to have inadequate treatment (p<0.00005).

Amongst those who took AED, 87% children were on monotherapy with carbamazepine (41%) and valproate being the most commonly prescribed drug (26%). Majority (80%) children were on monotherapy in a pediatric neurology clinic-based study of which carbazepemine was prescribed in 73% children.²¹

Our study had some limitations. It being an OPD based study there was selection bias and proper work up record was not available. There was no follow up data. Correlation of treatment gap with several factors like family background, socio economic status, seizure control etc. was not seen. Further study needs to be planned focusing exclusively on treatment gap.

CONCLUSION

Childhood seizures are common neurological disorder with significant physical, mental and social consequences. Neurocysticercosis and perinatal asphyxia are amongst the most common causes in developing countries. Appropriate preventive steps can thus reduce occurrence of seizures. Despite availability of easily available and effective treatment for seizures there is huge treatment gap with majority of children either not getting treatment or getting inadequate treatment in rural community. A significant proportion of people belief in evil spirit being cause of seizure. Spreading awareness amongst citizens is the need of hour.

The results of our study would help to streamline the limited resources available for management of childhood seizures in the rural community and conduct socio culturally acceptable health campaigns to educate people about seizure and bridge the treatment gap.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: The study was approved by the Institutional Ethics Committee

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