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Patient Engagement in Epilepsy:

Epilepsy is the second most common and frequently encountered neurological condition that imposes a heavy burden on individuals, families, and also the health care system. It is a chronic medical problem requiring long-term treatment. Of the 70 million persons with epilepsy (PWE) worldwide, nearly 12 million PWE are expected to reside in India; which contributes to nearly one-sixth of the global burden.

The risk of premature death in people with epilepsy is up to 3 times higher than the general population. According to WHO Epilepsy fact sheet 2017, a great proportion of these deaths are preventable by providing continuous care and psychological support.

Epilepsy can be treated easily and affordably with inexpensive daily medication that costs as little as US$ 5- 10 per year. After 2 to 5 years of successful treatment and being seizure free, drugs can be withdrawn in about 70% of children and 60% of adults without subsequent relapse. Unfortunately, due to lack of knowledge and support about the disease, around three-fourths of people with epilepsy may not receive the complete treatment they need. (knowledge-gap and treatment-gap). These gaps lead to nonadherence to treatment, which is among the highest in Epilepsy (30% – 50%). A study conducted in 1998 calculated that the cost per patient of epilepsy treatment in India was as high as 88.2% of the country’s per capita Gross National Product (GNP), and epilepsy-related costs, which included medical costs, travel and lost work time, exceeded $2.6 billion/year. (Thomas SV, Sarma PS, Alexander M, et al. Economic burden of epilepsy in India. Epilepsia 2001;42:1052–1060)

The prevalence of antiepileptic drug nonadherence among patients is significantly associated with variables like availability of health information, epilepsy-related stigma, absence of social support, AEDs side effects, duration of the treatment, and ways of getting AEDs (free of charge or with fee). Non-adherence to AEDs has been associated with reduced seizure control, lowered quality of life, decreased productivity, seizure-related job loss, and seizure-related motor vehicle accidents. Patient-oriented epilepsy treatment programs and clear communication strategies to promote self-management and patients’ understanding of epilepsy are essential to maximizing treatment and quality of life outcomes while also minimizing economic costs.(Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: Survey of patients with epilepsy and physicians. C.A. Hovinga et al. / Epilepsy & Behavior 13 (2008) 316–322). Giving brief psychoeducation about epilepsy, AEDs side effect and the importance of sticking with the recommended drug use can improve AEDs adherence.

Need for Advice and information on Epilepsy

People with epilepsy have a need for clear, accurate and appropriate information and advice. Surveys have reported that up to 90% of patients want more information and feel that they have got, little advice regarding the cause of epilepsy, effects, of drugs and the avoidance of potentially dangerous situations. Moreover, patient forgets and fail to understand instruction given during clinic visits. Therefore, post follow-up contact is required.

The quality of epileptic information and mode of delivery plays a critical role. Many patients prefer talking to an epilepsy nurse or someone with whom they feel connected and at ease. The information should be provided at different times for the duration of treatment to ensure understanding.

Recent studies have suggested that patients with epilepsy feel more connected to healthcare providers who are approachable, communicative in delivering adequate information on their condition. Information should be adjusted to their understanding, according to their socio-cultural contexts.

Research in developed countries has concluded that reducing the information deficit would significantly reduce the morbidity associated with epilepsy.

Epilepsy is not just a seizure disorder but one that is known to be associated with major psychosocial challenges (Jacoby, Baker, Steen, Potts, & Chadwick, 1996). Caregivers and patients report high satisfaction with having someone on the care team that is more accessible and who has the capacity to advocate on their behalf (Scottish Intercollegiate Guidelines Network [SIGN], 2003).

Once the diagnosis of epilepsy is made, patient and their families have numerous questions concerning the diagnosis and how it affects their life. Failure to answers these questions demotivates the patients and they feel neglected. This negative attitude will have an adverse effect on their health. It is the responsibility of healthcare provider to ensure that patients are provided with full support during the course of treatment.

Group support is an important resource for anyone living with a chronic illness. Many countries and NGOs have started local support groups for epilepsy, consisting of patients and caregivers. These support groups provide an opportunity to meet, share resources, speak with medical professionals and unite.

However, less developed countries, with 80% of PWE population, have been slow in building proper support and engagement mechanisms for epilepsy.


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