According to a study published in international journal Epilepsy and Behaviour by AIIMS doctors, half-hour communication sessions with epilepsy patients improves drug adherence in those patients with structured verbal and visual communication skills, and reduces the number of seizures significantly. However, as there are not many neurologists in the country, the communication programme – which included four sessions of half hour each – were administered by a nurse.
In the study, 180 patients of epilepsy diagnosed up to a month were included. In 34 per cent of the patients, a decrease in seizure frequency was observed.
Dr Manjari Tripathi, Professor of Neurology at AIIMS and corresponding author of the study, said, “Such communication forms the backbone of epilepsy management… We have applied internationally-used scales of drug adherence levels for the first time in the country and found that when nurses who are specially trained for the purpose are roped in, outcomes of treatment are much better.”
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As doctors have noted in the study, “In a developing country where the number of neurologists is few, this is one of the most neglected domains in the management of epilepsy.”
The epilepsy education programme for the study was developed by three epilepsy nurses, two epidemiologists and two social workers. It includes pictorial representations for different aspects including family life, employability and disease management. The programme was monitored via the control arm and the experimental arm.
“From the control arm, basic information was given by the doctor about the disease while treating patients. In addition to this, the experimental arm had special sessions with the nurses,” Dr Tripathi explained.
Teenu Mary Sebastian, the epilepsy nurse who conducted the communication program said, “While we did four sessions of half hour each, even two such sessions can improve outcomes to a great extent. 60-70 per cent of patients had queries about myths like making the patient smell a shoe or socks to control seizures. We made them understand that by taking the medicines, their seizures would be in control which would help them lead normal and healthy married lives.”
Doctors said with regular medication and reduced seizures, patients can also be weaned off medicines sooner. “Improved drug adherence is measured by reduction in seizures. Most of our patients cannot complete two years without seizures due to irregularity in medicines so we cannot even begin to start withdrawing the medicines,” Dr Tripathi explained.
The study also found “no significant change” in the ability of patients to take care of themselves or their self sufficiency in managing the disease after the communication.
Patients were also found lacking in basic internationally-used concepts like carrying an emergency card with their names and diagnosis.