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IMPACT OF PHARMACEUTICAL CARE SERVICES FOR EPILEPTIC PATIENTS IN NIGERIA
INTRODUCTION AND LITERATURE REVIEW
1.1.1 Background of study
Epilepsy is the most common non-infectious neurologic disease in developing African countries including Nigeria and remains a major medical and social problem. It is a common neurologic disorder characterized by recurring seizures that may recur unpredictably in the absence of provoking factors (NICE, 2015). An epileptic seizure is a clinical presentation which is linked to an abnormal and excessive discharge from a set of neurons in a specific locus of the brain. This clinical manifestation consists of sudden and transitory abnormal phenomena which may include alterations in consciousness, motor, sensory, autonomic and psychic behaviors (NICE, 2015).
Epilepsy affects approximately 70 million people of all ages throughout the world. The worldwide prevalence of epilepsy is inconsistent and diversified among countries, but it is estimated that the overall prevalence is 10/1000 people (NICE, 2015). Persons with epilepsy are at a risk of developing a variety of psychological problems including depression, anxiety and psychosis (Kabir et al; 2005; Dalrymple & Appleby, 2000).The reported prevalence of active epilepsy in developing countries range from 5 to 10 per 1,000 people (Kabir et al; 2005; Ozer, 1991). In Nigeria, the estimated prevalence of epilepsy is 8 to 13 per thousand people (Azubuike & Nkanginieme, 1996). In developing countries, the disorder is to a significant degree associated with a host of parasitic and bacterial infectious diseases that are largely absent in industrialized countries (Matuja & Rwiza, 1994).
Most patients suffering from epilepsy in African countries prefer anonymity and are reluctant to disclose their condition because of the stigma attached to the disease. This factor affects the prevalence rates, hence there is likelihood that most of the reported prevalence rates are grossly underestimated as the chances of under-reporting are high. The prevalence rates of epilepsy reported in Africa are based on surveys of defined communities and hospital admissions (Osuntokun, 1978).
The goal of treatment of epilepsy is to maintain a normal lifestyle by complete seizure control with minimal side effects. Treatment is with pharmacological and non-pharmacological methods. Antiepileptic drugs (AEDs) therapy is the mainstay of treatment for the majority of patients. Non-pharmacological strategies are primarily reserved for drug-resistant epilepsy (Nwani et al; 2012).
Sociocultural attitudes continue to have a negative impact on management of epilepsy in many African countries (Nbukpo et al; 2003). The disorder is enrobed in superstition, discrimination and stigma in many of these countries (Ndour et al; 2004). Religious and socio-cultural beliefs influence the nature of treatment and care received by people with epilepsy. Many communities in Africa and other developing countries believe that epilepsy results from witchcraft or possession by evil spirits and therefore treatment should be through the use of herbs from traditional doctors, fetish priests and religious leaders. This contributes to deterioration of the patients’ condition and development of complications. Persons with epilepsy are shunned and discriminated against in education, employment and marriage in Africa because epilepsy is seen as a highly contagious and shameful disease in the eyes of the public. These observations came from many studies carried out in Africa, including Nigeria and Liberia (Nwani et al; 2012). Pioneer investigators in Nigeria have also presented a gloomy picture of epilepsy as a highly infectious and disastrous disease in the eyes of the public.
The social implication of epilepsy is serious. In Madagascar and many African countries, patients with epilepsy are refused burial in the family grave. In many African countries, the patient with epilepsy is an outcast as it is believed that the disease results from visitation of the devil, effect of witchcraft, the revenge of an aggrieved ancestral spirit or consumption of something harmful in utero (Olunbunmi, 2006). Myths and misconceptions about epilepsy abound and are deep rooted, resulting in considerable stigma and discrimination leading to a wide treatment gap, particularly in developing countries. Stigma attached to epilepsy and the misconceptions about the disease often contribute to a greater burden than the disease itself (Gourie-Devi et al; 2010). Stigma can have significant negative influence on treatment seeking behaviour, quality of life encompassing all spheres of life including education, employment, marriage, child bearing and accrual of social benefits. Discrimination at school, job and by friends, spouse and family members adds to the burden (Gourie-Devi et al; 2010). Social discrimination affects not only the person with epilepsy but also the family members. The perception of stigma about epilepsy varies widely across countries and is considerably more in developing countries compared to the developed nations. In the developed nations high level of literacy, mass communication through media and wider reach of health care to the community have resulted in better understanding of the nature of epilepsy and remarkable decline in wrong perceptions and myths about the disease (Caveness & Gallup, 1980). However, in countries with low resources, poor awareness about epilepsy, stigma associated with the disorder, ignorance that it is a treatable disorder and restricted access to health care have a negative influence on the quality of life (Gourie-Devi et al; 2010).
1.1.2 Statement of Problem and Justification of the study
It has been observed that a patient’s knowledge and understanding of their condition has a significant role to play in providing good quality outcomes for the patient. A betterinformed patient with epilepsy will be more likely to provide relevant information to their healthcare provider to aid in diagnosis. Also, well informed patients will achieve better compliance with drug therapy, thereby leading to better seizure control.
Studies carried out amongst people with diabetes have found that education and counseling programs produces significant improvements in long-term control. However, insufficient information regarding what patients with epilepsy actually know about their disorder is available. A study in America reported that patients with epilepsy are ill-informed about their disorder, irrespective of their age, educational background, or number of years with epilepsy (National Epilepsy Week Special Feature). Another study carried out by the Department of Neurology at St. James Hospital and the School of Medicine, Trinity College, concluded that many people with epilepsy are not well informed about their disorder (National Epilepsy Week Special Feature).
A study in the United Kingdom found that the majority of those interviewed with epilepsy were generally unaware of their seizure type and indications for their antiepileptic drug therapy (National Epilepsy Week Special Feature).
In terms of awareness and social acceptance, numerous surveys carried out on general populations of developing countries report that people with epilepsy are often viewed with attitudes that become breeding ground for myths, stigma and exclusion (Al-Dawi et al; 2003; Al-Dawi et al; 2001). Unfortunately, there is the sufficient evidence suggesting that, on average, even healthcare providers in developing countries still harbor some negative attitudes toward people with epilepsy (Al-Dawi et al; 2003; Al-Dawi et al; 2000). These negative attitudes can be addressed by ensuring that the patients have a good understanding of their condition. Without sufficient knowledge, people with epilepsy are likely to become the victims of other people’s wrong beliefs and misconceptions. Earlier studies suggest that there is a direct relationship between patients’ understanding of their disability and their evolving proper coping mechanisms (Al-Dawi et al; 2003; Baker et al; 1999).
Through self-care, every patient can immensely contribute to the management of their diseases. By ensuring patients’ understanding of their disability and the coping mechanisms, people with epilepsy can achieve a great degree of control over their seizures, making it possible for a greater self-management of the seizures. The people with epilepsy may be more aware of their own needs and of the services available to meet those needs (Betts, 1992). The self-advocacy skills of the people with epilepsy may also improve, which puts them in a better position to explain their condition to others and thereby promote a positive view of epilepsy (Cockran, 1995). Studies have revealed that people with epilepsy know only a little more, and in some cases may even know less, about their disorder than those without epilepsy (Baker et al; 1999; Dawkins et al; 1993). Long et al in their study assessed the knowledge of people with epilepsy about their disorder as it regards safety, compliance and legal issues concerning driving and employment (Long et al; 2000). This study also revealed that, irrespective of demographic parameters such as age, education and duration of the illness, people with epilepsy tend to have limited knowledge about their condition (Long et al; 2000). As a result of this, people with epilepsy may be less likely to come to terms with their condition. Studies carried out in developing countries have examined cultural attitudes and awareness of epilepsy (Al-Dawi et al; 2003; Kleinman et al; 1995). However, not many investigations have been conducted to evaluate the knowledge of people with epilepsy of their condition. In Nigeria, adequate information on the knowledge and attitude regarding epilepsy among epileptic patients is lacking. As the incidence and prevalence of epilepsy are thought to be several-fold higher in developing than in industrialized countries, there is clearly a pressing need for examining how much patients from developing countries with epilepsy understand about their disease (Thoedore, 2000).
Health education has been shown to improve the adherence of patients to their anti-epileptic medication (Ibinda et al; 2014). A randomized controlled trial in Europe found that patient education improved knowledge about epilepsy, coping strategies, and seizure outcome (May & Pfafflin, 2002). Demonstration projects in rural China improved biomedical care using education and treatment interventions (Lil et al; 2007). However, the findings from these studies cannot be extrapolated to Nigeria due to different socio-cultural backgrounds and health systems.