Epilepsy treatment gap, associated risk factors and intervention strategies in Kilifi, Kenya

Epilepsy is a common neurological disorder, characterized by recurrent unprovoked seizures. Globally it affects over 69 million people of whom 90% live in Resource Poor Countries (RPCs). The prevalence is high in RPCs due to parasitic and infectious diseases, head injury and perinatal insults. Despite the high prevalence, many People with Epilepsy (PWE) do not receive appropriate treatment for their condition leading to a high Epilepsy Treatment Gap (ETG). The ETG is defined as the difference between the number of people with active epilepsy (who may benefit from treatment) and the number whose seizures are being appropriately treated. The attention given to epilepsy by international health agencies such as the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE) and World Health Organization (WHO) highlights its significance as the most common neurological disorder. In 1997, the Global Campaign Against Epilepsy, a partnership between ILAE/ IBE /WHO was launched to reduce the ETG in RPCs by providing information about the treatment and prevention of epilepsy among other measures. Epidemiological studies conducted in the Kilifi Health Demographic Surveillance System (KHDSS) have shown that epilepsy is prevalent in the community but no studies have been conducted on health care utilization by PWE. Therefore, the overall goal of this study was to estimate the ETG and investigate the factors associated with treatment seeking and non-adherence to Antiepileptic Drugs (AEDs) in order to develop appropriate interventions to reduce the gap. The studies in this thesis were conducted in the KHDSS, a rural area in the coast of Kenya, which is served by one district hospital and other public and private health facilities. Besides the biomedical resources, traditional medicine is well represented with different types of Traditional Healers (THs) offering their services to the community. The various research methodologies used to achieve the study goals included: synthesis of existing literature, qualitative and quantitative techniques. The first literature synthesis involved reviewing previous studies that looked at magnitude, causes and intervention strategies for the ETG in RPCs and the second one reviewed the evidence from RPCs on the efficacy of treatments and the delivery of interventions. In the qualitative studies, information was elicited on perceptions of epilepsy and its treatment from PWE and their caregivers, THs, community health workers, nurses and clinicians using in-depth interviews, focus group discussions, key informant interviews and observations. The literature review and qualitative study informed development of the Kilifi Stigma Scale for Epilepsy (KSSE) and the Kilifi Epilepsy Beliefs and Attitude Scale (KEBAS) that were used in the quantitative aspect of the study. The quantitative aspect involved administering a structured questionnaire to 673 PWE to investigate risk factors for treatment seeking and non-adherence to AEDs. Blood samples from PWE were also collected and assayed for AEDs to determine adherence. The studies were conducted by trained field staff following written informed consent. Findings from the systematic review in Chapter 2 indicated a wide variability in ETG estimates with a prevalence of 46.8/100 in urban settings and 73.3/100 for rural regions. The ETG was mainly attributed to inadequate skilled manpower, cost of treatment, cultural beliefs and unavailability of AEDs. These factors were addressed using intervention strategies such as education and supply of AEDs. The literature review in Chapter 7 highlighted some of the treatments available for epilepsy in RPCs: AEDs therapy, surgery and psychosocial therapy. Among the interventions feasible in these countries are: ensuring an adequate drug supply, educating PWE and caregivers about epilepsy, community-based interventions to improve awareness, training health care providers, involving THs and integrating epilepsy care into existing health services, particularly mental health. Chapters 3 and 4 provide details of how to construct culturally varied tools. The KSSE was unidimensional, indicating that it measured only one construct (perceived stigma). In addition, it had high internal consistency (Cronbach‘s α=0.91) and excellent test-retest reliability (r=0.92). The KEBAS had five subscales (causes of epilepsy, biomedical treatment of epilepsy, cultural treatment of epilepsy, risk and safety concerns and negative stereotypes about epilepsy). The demonstrated adequate internal consistency ranging from α=0.56 to α=0.76 and acceptable test-retest reliability ranging from r=0.64 to r=0.81. The quantitative part of the study (Chapters 5 and 6) identified the obstacles to treatment seeking and adherence as: duration of epilepsy; religion; distance to health facilities; paying for AEDs; injury during a seizure; beliefs about causes of epilepsy; beliefs about biomedical treatment of epilepsy; duration of medication; seizure frequency; number of AEDs prescribed and having a good relationship with the healthcare provider. Multivariate logistic regression analysis indicated the most important factor influencing treatment seeking was long duration of epilepsy in children (Adjusted Odds Ratio (aOR)=8.01, 95% Confidence Interval (CI); 3.02–21.2) and in adults (aOR=9.00, 95% CI 2.87–18.9). The most important factor affecting adherence among children was long duration of medication (aOR=4.25, 95% CI 1.86–8.75) and in adults (aOR=6.50, 95% CI 1.58–9.63). The ETG based on detectable and optimal AEDs blood levels was 74.9% (95% CI; 71.4-78.1). The qualitative part of the study demonstrated that PWE utilize both biomedical and traditional medicine. The study in Chapter 8 identified six key differences between biomedical and traditional treatments that made PWE prefer seeking treatment from THs: explanations of causation, communication styles, social roles, referral practices, location and systems of payment. The study in Chapter 9 established the following as factors that hindered treatment seeking from health facilities: lack of knowledge on causes, treatment and prognosis of epilepsy, financial constraints, distance to health facilities, unavailability of the AEDs, superstitions and beliefs about epilepsy and poor doctor-patient relationship. These findings indicated several possible avenues for intervention such as education of PWE and their caregivers, communication skills training for health providers, improving drug supplies in health facilities, increasing cooperation and dialogue with THs and supporting PWE and their families. The studies in this thesis enabled us to examine the ETG using multi-disciplinary approaches. The results contribute to our understanding of the factors that guide PWE in their labyrinthic treatment seeking paths, including biomedical and traditional health services for the same condition. The qualitative part enabled us to understand cultural reasons for treatment seeking behaviour for epilepsy while the quantitative part allowed us to estimate the ETG using a robust pharmacological measure. The findings further underscore the important roles that can be played by different stakeholders in order to reduce the ETG. At the community level efforts should be put to improve knowledge about epilepsy. Healthcare providers should continually improve their relationship and communication with patients in addition to educating and counseling them. Traditional healers need to be integrated in health workers‘ trainings and encouraged to offer interventions that are consistent with their ability and style of knowledge. Policy makers need to incorporate epilepsy in the National Health Agenda in addition to ensuring adequate supply of AEDs to health facilities. Researchers should strive to disseminate research findings to policy makers as well as the community. The study concludes by making suggestions for future research among them the need for prevalence studies to estimate ETG so that it can be used as an outcome measure in health care.