Pathway to care of epilepsy patients: Exploratory study from an urban slum in Northern India

Epilepsy is a chronic neurological disorder with major psychosocial correlates. Most epilepsy patients in developing countries are untreated or inadequately treated. It is essential to understand the pathway, to care taken by epilepsy patients in a community, to be able to target appropriate services to them.

A community based study was conducted on all epilepsy patients in an urban slum in Northern India to study their pathways to care. A list of persons suffering from epilepsy was generated by house to house visits, snowballing, and key informant contacts. In-depth interview and Medical Record Review were used to document their pathway to care.

Thirteen of the twenty two patients had contacted a health-care provider for their first episode. The most common first link of care for the patients was secondary level Government hospitals. The next common was private practitioners, followed by Tertiary Care Hospitals, and registered medical practitioners. Eleven out of twenty two patients had to contact a Tertiary Level Center for seeking care. The number of health-care facilities consulted before arriving at their latest point of care ranged from 0 to 5. Traditional or faith healers were consulted at some point of time for cure.

There is a need to focus on strengthening and capacity building of the primary care settings for managing epilepsy to enable their better utilization. This shall prevent unnecessary referrals and hence the load on the already burdened higher facilities.