Disease Management & Barriers to Care: Part 1

Epilepsy is a common disorder that causes recurrent seizures. A seizure is a sudden alteration of behaviour due to a temporary change in the electrical functioning of the brain cells. There are many types of epilepsy.

Epilepsy is diagnosed if at least two unprovoked seizures have occurred at least 24 hours apart. Doctors will review symptoms and medical history. Several tests may be required to diagnose epilepsy and to detect the cause of seizures- including neurological examination, blood tests, genetic testing and brain imaging tests and scans such as EEG, MRI, CT scan etc.
Treatment with medicines and at times epilepsy surgery can control seizures for most people. Many require lifelong treatment, sometimes seizures eventually stop. Some children with epilepsy may outgrow the condition with age as well.

Under-recognition of seizures leads to diagnostic and treatment delays. Specifically, seizures with outwardly subtle symptoms, such as non-motor seizures, are under-recognized. Even among the primary healthcare doctors, overutilization of EEG, improper prescription of antiepileptic drugs, and inadequate skills in the management of drug-resistant epilepsies is a concern.

As epilepsy is a chronic and serious medical condition, long-term management by specialist doctors is required. A complete and accurate diagnosis, selection of optimal treatment, and counselling appropriate to individual needs is essential.

The patient and family have to be well informed to make decisions about choices of treatment, understand the need for long term treatment and options for dealing with drug resistant condition and its consequences.

About 70 percent of people with epilepsy are able to successfully manage epilepsy seizures with medication called anticonvulsants. Patients and families need to understand the importance of when and how to take medicine and never missing or suddenly stopping medicines.

While freedom from seizures is the ideal outcome of treatment, seizures can still occur while taking medication. Anticonvulsant drugs may cause complications or uncomfortable side effects including nausea, abdominal pain, dizziness, sleepiness, irritability, unsteadiness, poor concentration, double vision, etc- which need to be considered; however in most cases of treatment with seizure medicines, the benefits of medications clearly outweigh the risks. Learning how to reduce the risk for a seizure through lifestyle changes and understanding triggers can help better manage epilepsy. Proper adherence to prescribed treatment, appropriate follow ups with doctors, repeated regular investigations are essential. This comes at a significant cost to the patient and his family of time, money and effort.

Despite improvement in educational and social parameters over time - there is no significant change in the perception, stigma, and discrimination of epilepsy across the country. Even today it is referred to as ‘punishment for participation in a forbidden sacrifice’ and some believe that it is caused due to possession by evil spirits or sins of past life. This ongoing stigma can lead to delayed diagnosis and prevent people from seeking timely medical evaluation.

Epilepsy in early life has an adverse impact on growth and development of children. Children with epilepsy, especially in the rural settings often do not get into schools, have difficulty in coping, exhibit drowsiness, experience decreased attention, and have poor academic performance. Consequently, they experience discrimination in school environments, and some discontinue education.

The disability and psychosocial impact caused by epilepsy imposes huge burden on the individual, family and the community- especially in a traditional socio-culturally determined country like India.

The knowledge, attitudes, beliefs, and practices of individuals with epilepsy, their family, and society influence recovery and quality of life. A lack of illness specific knowledge causes people to follow different practices to manage the condition on their own understanding; and many patients discontinue treatment within 1 year because of poor knowledge regarding the outcomes after discontinuation.

Medication non-adherence is a major barrier to illness control- there exists poor understanding of the need for strict adherence to treatment routines, a lack of belief in medication efficacy, unavailability of medication in rural areas, and high costs of anti-epileptic medication are some key factors for discontinuation of medication.

The large treatment gap and poor quality of life is further worsened by the associated comorbidities and conditions. Research has highlighted the association of epilepsy in children with behavioural and psychiatric problems. Some comorbidities identified were: migraine, anxiety, depression, sleep disturbances, neurocysticercosis, pulmonary tuberculosis, and extra pulmonary tuberculosis. Behavioural problems in children with epilepsy, and the association of epilepsy with cognitive impairment have also been reported.

Epilepsy imposes a substantial economic burden as well. People from lower socioeconomic status are more vulnerable due to their limited capacity to access good quality healthcare. They tend to live at long distances from healthcare facilities and have to travel far to reach quality hospitals. Their direct costs includes medical costs related to: prevention, diagnosis, treatment and rehabilitation, outpatient treatment, investigation charges, radiological investigations, cost of medicines etc. The indirect costs include loss of time, productivity, and wages incurred by the families.

Even though epilepsy is an eminently treatable condition, it still remains a public health problem due to high stigma, wide socioeconomic inequity, large treatment gap, and the poor healthcare delivery system in India. Thus, the psychosocial and economic impact of epilepsy becomes crucial to understand. Epilepsy remains a complex public health problem that requires an integrated multidisciplinary approach to manage.