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National Library of Medicine: Prevalence of Epilepsy

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National Library of Medicine: Prevalence of Epilepsy

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Perceived causes and management of epilepsy among rural community dwellers in Ghana: a qualitative synthesis

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In Ghana, over 270,000 people live with epilepsy, of which 70% do not receive treatment. Despite the high number of people with the condition, misconceptions exist about its causes and management in African regions. The study assessed the perceived causes…

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World Health Organization: Treatment of Epilepsy

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World Health Organization: Treatment of Epilepsy

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After attending community education sessions on epilepsy organized by the Fight against epilepsy initiative, Francesca Larbie and her husband Thomas visited a project-led clinic for the first time. Francesca was diagnosed with epilepsy and prescribed anti-seizure medication - treatment that has completely changed her life for the better.

Before visiting the clinic, Francesca faced stigma in the community and had been told that she couldn't give birth because of her epilepsy. Now she and her husband have two lovely children. Thomas and Francesca have become role models and are living examples of how cost-effective medication and treatment for epilepsy can change lives.

In Ghana, many people, like Francesca, live in communities where there is stigma about epilepsy and a lack of accessible, affordable and quality treatment.

For this reason, the Ministry of Health of Ghana, in collaboration with WHO, launched the Fight against epilepsy initiative in 2012. The goals of the 5-year project were to improve the identification and management of people with epilepsy in the existing primary health care system and to develop a model of epilepsy care at the community level that could be scaled up nationwide.

The project was implemented gradually across five regions comprised of 10 districts and 55 hospitals and clinics. It involved developing a strategy for delivering epilepsy care; training primary health care workers and community volunteers; raising awareness and educating communities; engaging traditional and faith healers; and strengthening monitoring and evaluation within routine reporting systems.

The project was successful in increasing coverage from 15% to 38% in the implementing districts and more than 2700 people received treatment for the first time.

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After attending community education sessions on epilepsy organized by the Fight against epilepsy initiative, Francesca Larbie and her husband Thomas visited a project-led clinic for the first time. Francesca was diagnosed with epilepsy and prescribed anti-seizure medication - treatment that has completely changed her life for the better.

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Abstract

Stigma associated with any chronic disease is one of the greatest challenges to the treatment of the disease. Stigma in health is a complex concept, and it causes people with a stigmatizing disease to conceal their disorder. Epilepsy is one such condition with numerous outdated, sometimes inhumane, and sometimes absurd perceptions that tend to fuel its stigma. Health-care workers who participated in an epilepsy training program as part of a World Health Organization/Ghana Health Service collaboration were asked to compile the perceptions associated with epilepsy in their communities. The comments they gathered are presented here.

Introduction

In Ghana, public health forms a central approach to health service delivery with emphasis on primary health care. Yet, traditional beliefs are still at the forefront in the way diseases are perceived. With such beliefs, microorganisms, malnutrition, and deficiency states are not regarded as disease-causing agents. Rather, an act of antisocial behavior on the part of the patient or close members of his or her family is central to the cause of many diseases. In the traditional medicine theory, diagnosis requires making right a social wrong. In addition to the traditional medicine theory, witchcraft is also believed to cause illness. Witchcraft is a widely held conviction that certain individuals possess mystical powers which they use to harm and inflict diseases especially on relatives [1]. Traditional medical practices and treatment are thus widely accepted, and faith and psychic healers thrive. Because of the widely accepted traditional medical systems, unrealistic perceptions of causes and treatments for diseases such as epilepsy can be extremely high and tend to fuel the perception of stigma. Epilepsy stigma reduction forms part of the objectives of the Ghana Fight against Epilepsy Initiative. The Ghana Fight against Epilepsy Initiative is a World Health Organization (WHO)/Ministry of Health (MOH), Ghana collaboration funded by the Sanofi Espoir Foundation. Its main goal is to improve access to care and services for patients with epilepsy through training of health-care providers and improving community awareness on epilepsy.

Section snippets

Stigma concepts

Stigma is a complex concept that involves combinations of personal and social beliefs, personal and social attitudes, and the social environment [2]. Stigma is characterized by exclusion, rejection, blame, or devaluation that results from experience or reasonable anticipation of adverse social judgment identified with a particular health problem. Two main types of stigma associated with chronic diseases can be identified; enacted stigma and perceived stigma [3], [4], [5], [6]. With enacted

Epilepsy and Stigma

The exact prevalence of epilepsy in Ghana is unknown. However, it is estimated that the prevalence of active convulsive epilepsy is about 10.2/1000 people [9]. Regardless, it is a major health problem in the country, and the major reason for referral to neurological service in the country [10]. Almost any brain disorder can cause epilepsy, from inherited causes to poststroke epilepsy. In the literature, only 25-30% of epilepsy cases have an identifiable cause [11].

Epilepsy results in secondary

Methodology

As part of a pretest during a training program held in Tamale, Northern Ghana, in September 2012, participants were asked to list the perceptions on epilepsy in their communities. The training program was organized as part of the launch of the Ghana Fight against Epilepsy Initiative, which is a WHO/Ghana Health Service collaboration. The target group was health-care workers who had direct contact with patients with epilepsy. It was comprised of mostly community nurses, psychiatry nurses, and

Results

Overall, 54% and 26% of responses described were on the perceived causes of epilepsy and perceived treatment, respectively. Up to 20% of the responses were on the stigma of epilepsy (Fig. 1).

Discussion

We have shown here that the major perception on Northern Ghana is on the cause of epilepsy, which is perceived to be due to a contagious disease. In addition, taboos, spiritual/supernatural causes, and punishment of some sort for social wrongs are perceived to be etiologies for epilepsy similar to the dictates of the traditional medical theory [1]. These perceived causes are absurd as well as heart-wrenching. While some have a true scientific explanation, e.g., the sun can cause epilepsy in

Conclusion

On the foregoing, it is quite obvious that epilepsy can affect the behavior and quality of life not only of the person who has epilepsy but also of that person's entire family. These practices lend credence to the project "bringing epilepsy out of the shadows" of the International League Against Epilepsy (ILAE), the International Bureau of Epilepsy (IBE), and the World Health Organization (WHO), which focuses on understanding and reducing epilepsy-related stigma. We hope that by bringing this

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Stigma associated with any chronic disease is one of the greatest challenges to the treatment of the disease. Stigma in health is a complex concept, a...

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Prevalence of epilepsy in the onchocerciasis endemic middle belt of Ghana after 27 years of mass drug administration with ivermectin - PubMed

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The 1.4% prevalence of epilepsy in the Bono region is similar to the median epilepsy prevalence in sub-Saharan Africa. However, the persistent microfilarial prevalence and low ivermectin study coverage call for the Ghana Onchocerciasis Elimination Programme to step up its efforts to ensure that the …

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WHO: reducing the epilepsy treatment gap in Ghana

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World Health Organization: Fight against Epilepsy

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World Health Organization: Fight against Epilepsy

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Frontier: Pan African Medical Journal {Causes and Management of Epilepsy} Outside Source

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Frontier: Pan African Medical Journal {Causes and Management of Epilepsy} Outside Source

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Department of Epidemiology and Biostatistics, School of Public Health, Kwame University of Science and Technology, Kumasi, Ghana

Center for Disability and Rehabilitation Studies, Kwame University of Science and Technology, Kumasi, Ghana

Department of Health Promotion and Disability Studies, School of Public Health, Kwame University of Science and Technology, Kumasi, Ghana

Background: In Ghana, over 270,000 people live with epilepsy, of which 70% do not receive treatment. Despite the high number of people with the condition, misconceptions exist about its causes and management in African regions. The study assessed the perceived causes and management of epilepsy among rural community dwellers in Ghana.

Methods: A qualitative approach and phenomenological design were employed for the study. The population comprised community dwellers in Berekum, a rural town in the Bono Region of Ghana. A convenience sampling technique was used to sample the participants. An in-depth face-to-face interview with a semi-structured interview guide was used to collect participant data. Data were analyzed using inductive thematic analysis.

Result: A total of 15 participants were interviewed in the study, after which saturation was reached. Seven of the participants were men, and eight were women. Two categories emerged as the causes of epilepsy: socio-cultural and superstitious causes and biomedical causes. The socio-cultural and superstitious causes include "a manifestation or an influence of an evil spirit," "family curse or disease," "punishment from ancestors or gods of the land," "having several convulsions," "exposure to foam from an epileptic," and "bites from an epileptic during seizures", while the biomedical causes are "brain damage," "blood group," and "genetic makeup". Consulting with the spiritual realm, pouring water on the person or washing the person's face, and putting a spoon in the mouth were identified by the participants as ways to manage epilepsy.

Conclusion: The causes of epilepsy are primarily linked to the supernatural, with the results indicating that rural community residents largely attribute epilepsy to "evil spirits". This implies that the rural communities' knowledge about the causes of epilepsy is based on the social causation theory of disease and disability, which relates diseases to the supernatural. Management of the condition was mainly seen as spiritual.

Introduction

Epilepsy is a chronic brain disorder characterized by recurrent nervous system disturbance resulting from a sudden excessive disorderly discharge of the aggregate group of neurons from the cerebrum, leading to disturbances of sensation, motor signals and symptoms, or psychiatric and behavioral aspects with or without loss of consciousness ( 1). The World Health Organization (WHO) defines it as a chronic brain disease characterized by recurrent seizures with brief episodes of involuntary movement with either a part or the entire body and sometimes accompanied by loss of consciousness and control of bladder function ( 2).

Epilepsy is reported as the most common neurological condition, with an estimated 50 million people across the globe living with it. A global estimate shows that ~80% of those with the condition live in low- and middle-income countries ( 2), with less or no access to medical services or treatment ( 3). In Africa, an estimated 10 million people are living with epilepsy ( 4), with 5.4 million people in sub-Saharan Africa living with lifetime epilepsy ( 5). In Ghana, it is reported that 270,000 people are living with epilepsy, of whom 70% do not receive treatment ( 6).

Despite the high number of people with the condition, misconceptions exist about its causes and management in African regions. In ancient times, when people had no understanding or knowledge of biomedical science, epilepsy was attributed to spiritual or religious afflictions ( 4, 7), and its management was to seek care from traditional healers and people with spiritual powers ( 4). Epilepsy is a widely recognized health condition, but it is also poorly understood, even by persons close to the persons with it. Lack of knowledge about its causes has led to negative perceptions and beliefs, poor treatment, and stigma associated with it ( 8). According to Al-Dossari et al., the initial step toward devising strategies to dispel myths and misconceptions about the disorder involves assessing the knowledge, comprehension, beliefs, and causes associated with the condition ( 9).

Kassie et al. revealed a knowledge gap regarding the causes, nature, and treatment of epilepsy with varying traditional beliefs, attitudes, and practices worldwide ( 10). In Africa, the knowledge of epilepsy is fused into cultural and religious practices ( 11). People living with epilepsy and their families are faced with economic, social, and physical (injuries) challenges, mainly due to the stigma and misconceptions of the disorder ( 4). Individuals with the disorder are discriminated against in education, marriage, driving, and employment ( 4, 12). Understanding people's perspectives on the causes of epilepsy and its treatment is relevant to reducing the large treatment gap in managing the condition in Africa ( 11). Since the passage of Ghana's Disability Law (715) and subsequent ratification of the Convention on the Rights of Persons with Disabilities, attempts have been made to change people's perceptions and attitudes toward persons with disabilities, including those with epilepsy, but much has not been achieved generally. Most studies in Ghana focused on conditions such as hearing loss, visual impairment, physical disabilities, and autism. There is less information on the perception of the causes of epilepsy and how this influences its management. This study, therefore, sought to assess the perceived causes and management of epilepsy among rural community dwellers in Ghana.

Methods

The consolidated criteria guide for reporting qualitative research (COREQ) checklist ( 13) was used in reporting the study.

Study design

The methodological orientation employed in this study was phenomenological design. The population comprised community dwellers in Berekum, a town in the Bono Region of Ghana. The inclusion criteria were people who are from the community or lived the community for more than 15 years and aged above 18 years.

Sampling technique and sample size

A convenient sampling technique was used to sample the participants. Participants were recruited conveniently around roadsides, marketplaces, lorry stations, and churches. The purpose of recruiting participants from the area was to generate evidence on how epilepsy is perceived in the community. Potential participants were approached by the researcher face-to-face and invited to participate in the study. In all, 15 participants were recruited for this study because the saturation point was reached after interviewing this number.

Data collection

An in-depth face-to-face interview with a semi-structured interview guide was used to collect participant data. The guide was developed by D.G. based on the objectives of the study and revised by Y.E., the supervisor. Questions were open-ended; however, probes and follow-ups were utilized when needed. All interviews were conducted by D.G. in Akan (Twi) for 2 weeks in March 2017. Field notes and audio recordings were taken during the interviews. The duration of interviews was between 30 and 40 min. The recorded interviews were transcribed by D.G. in Twi verbatim and translated into English, which were then sent to other co-authors (T.I.G., R.T., and G.A.O.) for quality checks. D.G. and G.A.O. are Akan with Twi as their first language (speaking and writing).

Data analysis

Data were analyzed using inductive thematic analysis. Notes taken during the interviews were processed together with the audio transcriptions. Data were studied carefully, and themes were developed based on participants' responses to questions. Two authors conducted the thematic analysis and coding which were reviewed and discussed by all study authors.

Results

Demographic characteristics of the study participants

Table 1 shows the demographic characteristics of the participants. A total of 15 participants were involved in the study, of whom 7 were men and 8 were women. Regarding their age, seven of the participants were in the age group of 40-49 years. With employment status, eight were self-employed, four were employed, and three were students. In all, 13 participants have had some form of education.

Table 1. Demographic characteristics of participants.

Perceived causes of epilepsy

From participants' narratives, two primary themes, each with subthemes, emerged regarding the causes of epilepsy. These encompass (a) socio-cultural and superstitious factors and (b) biomedical factors. The socio-cultural and superstitious aspects encompass notions of "manifestation or influence of an evil spirit," "family curse or disease," "punishment from ancestors or gods of the land," "frequent convulsions," "exposure to an epileptic's foam," and "bites from an epileptic during seizures". Conversely, the biomedical causes consist of "brain damage," "blood group," and "genetic composition".

Socio-cultural and superstitious causes

A manifestation or influence of an evil spirit

As per the study's findings, epilepsy was perceived as a representation of an " evil spirit's " presence in a person's life, suggesting a connection where the spirit either possesses the individual or the person maintains a relationship with malevolent forces. For example, according to a participant,

" When a person or an individual is possessed by an evil spirit, the spirit manifests itself as epilepsy... therefore people get to know that this individual is possessed by an evil spirit" (Participant 2).

Some participants, however, thought that epilepsy is not just about being possessed by the "evil spirit" but a sign of being burdened by an "evil spirit". This manifests as epilepsy if the person can no longer bear the burden. A participant explained this in the following quotation:

" When there is a spiritual burden on someone, it manifests as epilepsy. Thus, when the person is tired in the spiritual realm or is possessed with an evil spirit, it manifests physically in the form of epilepsy" (Participant 4).

Some of the participants believed that epilepsy is used to sabotage individuals who are perceived as having a bright future, usually by a witch family member, as exemplified in the following quotation:

" Epilepsy is a condition that someone gives to another person through spiritual means when they see a bright future ahead of them. It only affects people when the witches in their family notice that the person has a bright future and through spiritual means, they place it on that individual" (Participant 5).

Another participant added,

" I know that epilepsy is caused by evil spirits. When an evil spirit in a family sees the bright future of a person, then they buy it [epilepsy] in the spiritual realm for the person" (Participant 3).

Family curse

Another socio-cultural notion among the participants concerning the cause of epilepsy is the idea that the condition is restricted to specific cursed families. Consequently, individuals are thought to not merely acquire epilepsy by chance but rather inherit it as a familial or bloodline curse. To them, some families are cursed to give birth to individuals with epilepsy, as stated by a participant,

" Epilepsy is a family disease or the result of a curse in a family that manifests within family members" (Participant 5).

Another respondent added,

" In some families, there are curses placed on them, and the sign of the curse is epilepsy. Hence members of the family become sufferers of it" (Participant 10).

Punishment from ancestors or gods of the land

The study uncovered that when an individual commits a transgression (engages in misconduct, commits crimes, performs evil actions, or acts immorally) against the deities or forebears of a community, the wrath and displeasure of these entities descend upon the person, and the consequence they face is the onset of epilepsy. Epilepsy, according to this belief, is acquired.

" When a person sins against the ancestors or gods of the land, the anger of the gods comes upon that person. The person is being punished by the gods by making him or her epileptic" (Participant 8).

Similarly,

" People commit some immoral acts which are against the tractions of this land, and a way of punishment the wrap of the gods comes on them, and one of wrap that comes is epilepsy" (Participant 14).

Experiencing several convulsions at a younger age

Participants also perceived that if an individual experiences numerous convulsions during their childhood and proper measures are not taken to address them, it could lead to the development of epilepsy. According to participants, certain parents underestimate the gravity of convulsions and assume that the child will naturally recover over time. Consequently, these parents do not seek timely medical attention for their child, resulting in the child eventually growing up with epilepsy. A participant explained:

" When a child experiences several convulsions, and the family is unable to seek healthcare for the child, it leads to epilepsy when he or she grows up" (Participant 1).

Some participants attributed frequent convulsions to excess phlegm in a person's body, which, if not cared for adequately, could later result in epilepsy. A participant noted:

" If phlegm's become much in a child's system, the child begins to experience a convulsion and if the family do not pay much attention, it leads to epilepsy" (Participant 1). [SIC]

Exposure to epileptic foam and bites

As per the accounts of certain participants, it is perceived that exposure to the foam produced from the mouth of an individual experiencing an epileptic seizure could lead to the development of the condition. Consequently, people take precautions to avoid contact with the foam in order to prevent acquiring the condition themselves. As explained by a participant,

" During epileptic seizures, when the foam comes in contact with another person, that person also develops epilepsy" (Participant 9).

Furthermore, participants explained that one could become epileptic when a person with epilepsy bites them:

" When an epileptic patient bite you during epileptic seizures, you will have epilepsy" (Participant 3). [SIC]

Biomedical causes

Brain damage

Some participants associated epilepsy with biomedical factors, including brain damage resulting from accidents as well as incidents occurring during pregnancy and childbirth. According to this viewpoint, when an accident occurs and an individual experiences a brain injury, the person may develop epilepsy. It has been noted that when there is any injury to a child's brain during pregnancy or childbirth, the child may develop epilepsy after birth. Two participants explained this in the following quotations:

" Epilepsy can be due to brain damage resulting from an accident. When someone has epilepsy, it means that the person is suffering from brain damage, and during the seizures, the person becomes unconscious" (Participant 7).

" Most women are careless during pregnancy, and they end up damaging the child's brain whiles in the womb. Also, during delivery, some complications can arise which can cause damage to the brain and later leads to epilepsy" (Participant 3). [SIC]

Blood group and genetic makeup

Some other participants linked the cause of epilepsy to the compatibility of the parent's blood groups. It was noted by participants that some blood groups are not compatible. Hence, when these individuals marry and give birth, the child is likely to develop complications such as epilepsy. A participant explained:

" There is some blood that is not compatible with others, and so when a couple's blood group are not compatible, and they give birth, the child they will give birth to may develop epilepsy" (Participant 3).

Additionally, some participants reported that epilepsy is genetic; hence, one may acquire the condition if either of the parents has it.

" When a parent has epilepsy, genetically their child too can acquire it" (Participants 3 and 12).

Perceived management of epilepsy

The following themes emerged in the community's management of epilepsy: "consultation from the spiritual realm," "pouring water on the person or washing the person's face," and "putting a spoon in the mouth".

Consultation from the "spiritual realm"

The study's findings revealed that epilepsy is interpreted as a spiritual affliction that impacts individuals. Participants hold the view that this ailment or state cannot be remedied through medical interventions but rather requires spiritual remedies. Consequently, seeking counsel from individuals possessing spiritual abilities, such as fetish priests, witch doctors, mallams (Muslim ritualists in Ghana), pastors, and similar practitioners, is perceived as the most effective approach for treating the condition. Several of the participants explained as follows:

" Epilepsy is a spiritual disease that affects people ... there is no physical cure or medication that can cure it ... but it can be cured through spiritual means."

Pouring water on the person or washing the person's face

Some participants disclosed that they would splash water on the individual or cleanse their face in order to restore their consciousness, as indicated by one participant:

" When I see one, I will look for water and wash the person's face till he or she comes to consciousness" (Participant 3).

Participants also noted that dousing a sleeping person with water leads to their awakening, similarly, pouring water on an unconscious individual causes them to regain consciousness. A participant elaborated:

" I will pour water on the person when the seizures come. This is to bring the person back to consciousness. I know that when one is asleep, and you pour water on the person or wash the person's face with water, the person wakes up from sleep, and I think when that is also done to someone who is in a seizure, the person will come back to consciousness" (Participant 8).

Putting a spoon in the mouth

Some participants also reported that another way to prevent a person with epilepsy from biting the tongue is to insert a spoon in the person's mouth.

" I will put a spoon in the person's mouth to prevent him or her from swallowing or biting the tongue" (Participant 15).

Discussion

This study was conducted in rural communities in Ghana to assess the perceived causes and management of epilepsy. Epilepsy is one of the major chronic non-communicable diseases of the brain in Ghana, with ~270,000 people living with the condition ( 6). It is the most prevalent neuropsychiatric condition reported in rural health institutions and is among the top five medical conditions in the country. However, there is a treatment gap, with only ~15% of people with epilepsy receiving treatment and care ( 6). This study is therefore relevant, as it has highlighted perceptions about the causes of epilepsy in a rural setting that affect the management and care of people with epilepsy in such settings.

The finding that evil spirits cause epilepsy is not new, but this old-age misconception has become deep-seated in Ghana, especially in rural areas. The findings from this study seem to reinforce this misconception about the cause of epilepsy. This finding is similar to Abasiubong et al.'s study, which revealed that in the olden days when people had no knowledge or understanding of biomedical science, epilepsy was attributed to a spiritual or religious affliction ( 14). Even though there is advancement in biomedical science at this present time, people still have ancient beliefs about epilepsy as the manifestation of an evil spirit in the victim. Awareness about epilepsy is needed, especially in rural settings, to manage the condition associated with secondary outcomes, such as burns and falls.

Studies have revealed that what people perceive most to be the cause of epilepsy among rural dwellers is witchcraft. In research led by Abasiubong et al. regarding how traditional healers perceive the causes of epilepsy, witchcraft stood out as the prevailing factor ( 14). In the present study, the community members' perception of the cause of epilepsy aligns with that of the aforementioned study. The community dwellers believe that witches can see into the future; therefore, when they foresee a person's future in the family is bright and they do not want that to happen, through witchcraft, they buy the sickness and place it on the person's life. As the individual continues to have seizures, people will isolate themselves from the person, and that future will not come to pass.

The study findings show that the social causation theory of disease and disability is dominant in rural areas. According to Krieger, the theory views sickness and disease as the consequences of disintegration at the social level through anti-social behavior and supernatural intervention or possession ( 15). Concerning the Akans, most neurological and mental disorders are attributed to witchcraft ( 15). People's supernatural beliefs, such as witchcraft and punishment from the gods, are frequently attributed as the cause of neurological disorders like epilepsy.

Epilepsy is perceived as a familial affliction or a generational curse that casts its shadow upon family members. The findings indicate that epilepsy serves as an indicator that a family is under a curse. It is believed that in times past, specific families maintained associations with idols and fetish priests. As these families distanced themselves from idol worship, they allegedly incurred curses, resulting in ailments meant to disgrace the family. Some members of these families now bear the weight of these curses, manifesting as various diseases, including epilepsy. Consequently, epilepsy is viewed as a condition befalling cursed families. Additionally, it is regarded as a sign alerting a particular family to their cursed state, prompting them to seek aid or appeasement from the very idols and fetish priests they once had relations with. Masia and Devinsky stated that epilepsy was seen as a curse for possessing evils, mainly resulting in the isolation of the affected person and the family ( 16).

The study further reveals punishment from the gods or ancestors for sins committed as a cause of epilepsy. When an individual transgresses or violates the sanctity of the gods, it is held that the gods' wrath befalls that person, resulting in the onset of epilepsy as a form of retribution. This individual is said to experience epilepsy so that the broader community can draw lessons from it. Essentially, epilepsy is considered a means of compelling people to adhere to moral standards. Evidence from a study by Abasiubong et al. ( 14) justifies the findings of this current study. Their study showed that 14% of the population attributed the cause of epilepsy to punishment for sins ( 14).

In addition, the study identified brain damage as the cause of epilepsy. Birth complications can result in brain damage, which in turn might lead to the development of epilepsy. Similarly, accidents involving head injuries can also be a factor in causing epilepsy. Consequently, for certain participants, epilepsy is understood as a condition arising from brain damage. Notably, it is reported that 25% of epilepsy cases are preventable; however, a significant proportion of these preventable cases are concentrated in Africa due to elevated rates of prenatal and perinatal complications ( 4). Even though some participants stated that it was caused by brain damage, they still attributed it to witchcraft. They believe that for an accident to occur, which will involve a person's brain, or for a complication to develop during childbirth, it is all the plans and evil intentions of the witches or gods. Without this, a person's brain will not be damaged. Epilepsy can be genetic or acquired. Epilepsy that is acquired is caused by serious brain trauma, stroke, tumors, or infection in the brain ( 17).

A bite from an epileptic patient experiencing seizures or exposure to foam during seizures was perceived as a cause of epilepsy. People believe that epilepsy is contagious ( 18). This notion leads to the understanding that one might contract the condition through bites or contact with the foam produced during seizures. This might explain why community residents fail to guarantee the safety of individuals when they experience seizures in public. In most rural areas and even urban settings in Ghana, people who experience seizure episodes are left alone without anyone ensuring that the surroundings are safe and that the patient will not be hurt. The above-mentioned perceived causes of epilepsy have led to stigma and discrimination toward people with epilepsy. Individuals with the condition are approached with fear and are prevented from participating in social and economic events such as marriage, school, driving, and employment ( 4).

Convulsions and an abundance of phlegm within the body were considered responsible for the onset of epilepsy. A surplus of phlegm in an individual's system was believed to trigger convulsions, and if these convulsions were not properly addressed during childhood, they could subsequently evolve into epilepsy. Certain parents, who lack an understanding of the severity of convulsions, presume that with the passage of time, the child afflicted by convulsions will naturally overcome them. Consequently, they refrain from seeking prompt medical intervention for their child, which ultimately leads to the child developing epilepsy at a later stage. The findings support Annegers et al.'s study, which found febrile convulsions as a cause of epilepsy ( 19). Amid convulsions, disruptions within the brain may occur, potentially leading to its impairment and consequently giving rise to epilepsy. A study by Verity and Golding revealed that when young children frequently experience febrile convulsions at an early age, they are more likely to develop epilepsy; that is, if the febrile convulsions occur in the first year of the child's life ( 20).

Predominantly, epilepsy was perceived as a condition intertwined with "evil spirits", thereby leading to the approach of seeking guidance from individuals possessing heightened spiritual abilities for its management. A similar finding was discussed in the toolkit " Advocates' Toolkit for making epilepsy a Priority in Africa" ( 4). Due to the misconception and stigma about the condition, most people with epilepsy do not receive medical care. Estimates show that 80% of people with epilepsy in Africa do not receive medical care ( 4).

Conclusion

The causes of epilepsy are primarily associated with supernatural factors. The findings indicated that individuals residing in rural communities predominantly attribute epilepsy to "malevolent spirits". This suggests that the rural population's understanding of epilepsy is rooted in the social causation theory of disease and disability, which connects ailments to supernatural forces. The approach to managing the condition was largely spiritual in nature. Consequently, the study suggests the implementation of comprehensive health education programs concerning neurological and mental health conditions, given their substantial association with supernatural beliefs. Moreover, future investigations should explore the ramifications of these findings on the lived experiences of individuals with epilepsy. Finally, research is warranted to ascertain the prevalence and connections of epilepsy-related injuries.

Data availability statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Ethics statement

Approval for the conduct of the study was taken from the Center for Disability and Rehabilitation Study, KNUST. The protocol was reviewed by the Head of Department and the Supervisor of the student work before the study commenced. Written informed consent to participate in the study was from the participants before their involvement.

Author contributions

DG: conceptualization, data collection, transcription, coding of themes, interpreting the data, writing the original draft, and final review and editing. YE: supervision, coding of themes, and review and editing. TG, RT, GA-O, IO, and WM: review and editing. All authors contributed to the article and approved the submitted version.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

The handling editor AA declared a past collaboration with the author IO.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

References

14. Abasiubong F, Ekott J, Bassey E, Nyong E. Knowledge, attitude and perception of epilepsy among traditional healers in Uyo, Nigeria. Glob J Community Med. (2009) 2:39-46. doi: 10.4314/gjcm.v2i1-2.47928

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# data[].attributes.attachment_link.title
Perceived causes and management of epilepsy among rural community dwellers in Ghana: a qualitative synthesis

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BackgroundIn Ghana, over 270,000 people live with epilepsy, of which 70% do not receive treatment. Despite the high number of people with the condition, misconceptions exist about its causes and management in African regions. The study assessed the perceived causes and management of epilepsy among rural community dwellers in Ghana.MethodsA qualitative approach and phenomenological design were employed for the study.

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Map of Study Showing Affected Areas of Epilepsy in Ghana

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Map of Study Showing Affected Areas of Epilepsy in Ghana

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Abstract

Background

In onchocerciasis-endemic areas with high ongoing Onchocerca volvulus transmission, a high prevalence of epilepsy has been reported. This study aimed to determine the prevalence and clinical characteristics of epilepsy in the Bono Region of Ghana following 27 years of implementation of ivermectin mass drug administration (MDA).

Methods

Between October 2020 and August 2021, cross-sectional surveys were conducted in nine communities in the Tain District and Wenchi Municipality of the Bono Region of Ghana. In the first stage, a random door-to-door approach was used to screen the population for epilepsy using a pre-tested questionnaire. Persons suspected of having epilepsy were invited for a second-stage neurological examination for case verification. Community O. volvulus microfilarial infection status and Ov16 seropositivity were also determined. Ninety-five confidence intervals (95% CI) for prevalence values were calculated using the Wilson Score Interval.

Results

Of the 971 participants, 500 (51.5%) were females, and the median age (interquartile range) was 26 (15‒43) years. Fourteen participants (1.4%, 95% CI: 1.0‒2.0) were diagnosed as having epilepsy with generalized seizures being the most frequent seizure type (85.7%, 12/14). The overall microfilarial prevalence of O. volvulus was 10.3% (November 2020) and 9.9% (August 2021); the Ov16 seroprevalence was 22.2% (June 2021). Only 63.2% took ivermectin in the last round of MDA distribution in March 2021.

Conclusions

The 1.4% prevalence of epilepsy in the Bono region is similar to the median epilepsy prevalence in sub-Saharan Africa. However, the persistent microfilarial prevalence and low ivermectin study coverage call for the Ghana Onchocerciasis Elimination Programme to step up its efforts to ensure that the gains achieved are consolidated and improved to achieve the elimination of onchocerciasis by 2030.

Graphical Abstract

Background

Onchocerciasis, a severe neglected tropical disease (NTD) still plagues about 21 million individuals from the poorest of the poor populations, mostly in sub-Saharan Africa (SSA), with small endemic foci in Brazil, Venezuela, and Yemen [ 1]. The disease is caused by infection with the filarial nematode Onchocerca volvulus, and is transmitted by blackflies of the genus Simulium, which breed in fast-flowing, well-oxygenated rivers [ 2]. Onchocerciasis has huge socio-economic and psychosocial implications for the unfortunate sufferers and their families due to its clinical manifestations, including intense chronic dermatitis, subcutaneous nodules, skin atrophy, visual impairment and blindness, among others [ 3]. About 500,000 cases of severe visual impairment and 270,000 cases of blindness were officially attributed to onchocerciasis prior to the inception of regional control initiatives, but these figures are thought to have been underestimates of the true burden of the disease [ 4], with other (baseline) estimates indicating figures nearly twice as high, with approximately 900,000 suffering from visual impairment and 400,000 people blind due to onchocerciasis [ 5].

Aside from the well-known dermatologic and ophthalmic pathologies associated with onchocerciasis, there is a growing body of evidence for the association between onchocerciasis and the development of epilepsy, known as onchocerciasis-associated epilepsy (OAE) [ 6]. Though recognition of this association dates back to 1938, an etiological link is still pending universal acceptance [ 7]. This notwithstanding, several epidemiological studies have demonstrated a high prevalence of epilepsy, especially in areas that are meso- and hyperendemic for onchocerciasis where the transmission of the parasite is very intense and/or not well-controlled due to the sub-optimal implementation of mass drug administration (MDA) with ivermectin programmes [ 7, 8, 9, 10, 11].

Ghana is one of the countries where initial community trials of ivermectin were performed in 1987-1991 [ 12], and was among the first countries to start an MDA programme with ivermectin in 1995, via mobile teams [ 13]. Fifteen out of the sixteen regions of Ghana are endemic for onchocerciasis. The Community Directed Treatment with Ivermectin (CDTI) strategy was implemented in all of them, with all endemic communities receiving treatment annually after 1998 [ 13]. Following the cessation of the Onchocerciasis Control Programme in West Africa (OCP) in 2002, some regions, classified as Special Intervention Zones (SIZ; areas where microfilarial prevalence remained above 50%, and identified as of concern by the OCP), received further interventions beyond 2002. In Ghana, SIZs included an area in the Pru River basin, where CDTI continued yearly till 2012 [ 14].

Despite the implementation of CDTI in the late 1990s, inadequate financial support coupled with management challenges led to the erratic distribution of ivermectin with poor therapeutic and geographical coverage for most of the treatment areas [ 13]. The inception of the lymphatic filariasis (LF) elimination programme in 2000 led to the distribution of ivermectin and albendazole to many (co-endemic) communities in Ghana [ 15]. From 2004, drug distribution as part of the LF elimination programme was combined with the onchocerciasis control programme, resulting in substantial improvements in geographical and therapeutic coverage. There was a gradual increase in the number of people treated and epidemiological coverage. In 2016, over 4 million individuals in endemic communities were treated. The therapeutic coverage increased from 58.5% in 1997 to 83.8% in 2016. After 2006, the coverage was consistently above 65% [ 13].

In the initial stages of CDTI, up-to-date mapping data were not available for the country, so the programme relied on historical data compiled from regional and district health teams, as well as community surveys, to guide the treatment for onchocerciasis. In 2008, Rapid Epidemiological Mapping of Onchocerciasis (REMO) [ 16] was undertaken in Ghana, with the support of the African Programme for Onchocerciasis Control (APOC), to rapidly re-map and identify onchocerciasis-endemic communities (based on onchocercal nodule prevalence). Endemicity maps were developed for the preparation of a national plan for onchocerciasis control, and for a re-launch of ivermectin MDA in the newly identified communities. High-risk communities were selected (communities in the immediate vicinity of major potential vector breeding sites) [ 13]. Blackflies are known to have a typical flight range of 20 km around their breeding sites (although, wind-aided, they may fly distances of at least 400 km [ 17, 18]). Communities were, therefore, selected for treatment along the identified rivers within the 20 km flight range of the blackflies [ 13]. In 2009, biannual (6-monthly) treatment with ivermectin was instituted in 55% of districts. The number of communities treated gradually increased from 2009 [ 19].

The epidemiology and socio-economic burden of the dermatological and ophthalmological pathologies of onchocerciasis, as well as the impact of ivermectin MDA on such pathologies, have been assessed in several studies. However, to date, only one study conducted in 2010‒2011 [ 20] investigated the prevalence of epilepsy in an onchocerciasis-endemic area in Ghana. The prevalence of a history of convulsions in the demographic surveillance site of Kintampo, in the middle belt of Ghana, was 2.9% (95% confidence intervals (95% CI): 2.8‒3.0%) and persons with epilepsy were twice as likely to present O. volvulus IgG4 antibodies compared to controls (odds ratio = 2.32; 95% CI: 1.12‒4.78) [ 20].

Given the long history of onchocerciasis interventions in Ghana, the aim of this study was to determine the prevalence and clinical characteristics of epilepsy in onchocerciasis-endemic communities in the Bono Region of Ghana, where ivermectin MDA has been implemented for the past 27 years.

Methods

Study area and history of control in the study villages

This study was performed from October 2020 to August 2021 in nine rural onchocerciasis-endemic communities in the Tain District and Wenchi Municipality of the Bono Region of Ghana (Fig. 1). The Tain District has a total area of 1829.85 square kilometres and a population size of 88,104 consisting of 50.6% females and 49.4% males [ 21]. The Wenchi Municipality has a total area of 1296.60 square kilometres and a population of 89,739, with 50.9% females and 49.1% males [ 22]. The selected study communities were Abekwai 2, Abekwai 3, Attakrom, and Kokomba in the Tain District, and Blibor, Johnykrom, Subinso 1, Subinso 2, and Kwanware in the Wenchi Municipality (Fig. 1). This map indicates that the study villages consist of two clusters, one cluster of four villages in Tain District to the west of the main Tain river, and one cluster of five villages along the Subin River in Wenchi Municipality (the maximum cluster diameter is 11 and 8 km, respectively). It is important to differentiate these two clusters because their vector control history is different. The section of the main Tain river from the village of Tainso till the junction with the Black Volta started vector control in 1976 as part of Phase II of the OCP. The Subin river was part of the South-Eastern Extension of the OCP that became operational in 1988. The Subin river was under vector control from 1992 onwards but vector control may have started a few years earlier. Vector control ended in both the Tain and Subin rivers in 1996. The baseline O. volvulus (crude) microfilarial prevalence for Kwanware (in the Wenchi cluster) in 1989 was 48.1% (95% CI: 41.5-54.8%) and the community microfilarial load (CMFL) was 7.26 microfilariae per skin snip (mf/ss), indicating mesoendemicity according to OCP data. In a survey conducted by the OCP in the year 2000, these values had decreased to 15.6% (95% CI: 10.0-23.6%) and 0.33 mf/ss, respectively, and in another survey conducted in 2012 (supported by APOC Trust Fund), the mf prevalence was 5.6% (95% CI: 2.2-13.6%). All the other study communities in the Wenchi cluster lie within 8 km of Kwanware and are located within the Subin river basin. For the Tain cluster, there are no data on pre-control microfilarial prevalence for our specific study villages. However, there is one nearby OCP village, Tainso, for which pre-control (crude) microfilarial prevalence is available for 1980 (40.7%, 95% CI: 35.4-46.2%) and which is situated within 4-10 km from each study village in the Tain cluster, also indicating mesoendemicity. The villages in both clusters have received MDA by mobile teams since 1994-1995, and CDTI since 1998. They have, therefore, had ivermectin MDA programmes for the past 27 years. Since 2009-2010, the onchocerciasis control programme in our study area switched from annual to biannual ivermectin MDA in Tain and subsequently in Wenchi [ 13] (Additional file 3: Table S1).

Map of Ghana showing the location of the study communities within the Tain District and Wenchi Municipality (Bono Region)

Ethical clearance

The study was approved by the Committee for Human Research and Ethics of the University of Energy and Natural Resources in Sunyani, Ghana, West Africa (Approval number: CHRE/AP/08/021). In each of the study communities, a meeting with the community head and key opinion leaders was held during which the study was discussed and consent was obtained. In each household, a written, signed/thumb printed consent of the household heads, as well as each participant and/or their parent/guardian, was obtained. In addition to the written consent of their parents/guardians, children between 10 and 17 years were asked to provide assent to the consent form.

Study design

This was a population-based cross-sectional study, using a door-to-door approach, the gold standard for neuro-epidemiological surveys to identify epilepsy cases in Low- and middle-income countries (LMICs) [ 23]. For small communities (≤ 40 households), all households were included; for larger communities (> 40 households), households were randomly selected. In the first stage, members of selected households were screened by trained research assistants to identify persons suspected of having epilepsy using a pretested questionnaire (Additional file 1). The questionnaire consisted of five epilepsy screening questions adapted from a previously validated questionnaire in Mauritania [ 24]. If a person answered 'Yes' to any of the five questions on epilepsy, then they were considered suspected epilepsy cases and were referred to the medical team for the second stage neurological examinations. Each household member was also asked whether they had taken ivermectin during the previous distribution round. The household screening tool also collected data about the duration of residence in the community, the main income-generating activity of the family, exposure to pigs (a risk factor for Taenia solium taeniasis/cysticercosis, as neurocysticercosis is also associated with epilepsy), and whether household members had died of epilepsy in the past. In the second stage, suspected cases of epilepsy identified during the household screening surveys were invited for clinical examination by a medical team made up of a medical doctor (JA) and a physician assistant (JGB) who either confirmed the diagnosis of epilepsy or suggested an alternative diagnosis. The diagnosis by the field medical team was also confirmed independently by a second clinician (VAD). The medical team was trained to diagnose epilepsy as per the International League Against Epilepsy (ILAE) guidelines: having experienced at least two previous seizures, unprovoked and without fever, with a minimal time difference of 24 h between the two events [ 25]. The neurological questionnaire (Additional file 2) included questions about the onset of epilepsy, symptoms, clinical characteristics, types of seizures, psychomotor development, etc. Participants were also asked about the occurrence of severe diseases prior to developing epilepsy, whether they were known to have epilepsy, how they were treated for epilepsy, and to recall their pattern of ivermectin intake over the past years as well as during the most recent treatment round of March 2021.

Data collection and management

During the household screening stage, data gathered during the screening stage were collected on the Kobocollect app [ 26] using Android tablets. To clinically confirm suspected epilepsy cases, the medical team used a second questionnaire also deployed on KoboCollect. Unique codes were assigned to each suspected case of epilepsy to link their parasitological and serological data.

Parasitological diagnosis of onchocerciasis

During 2020, due to the coronavirus disease 2019 (COVID-19) pandemic, CDTI was not delivered. Therefore, in November 2020 we collected parasitological data one year after the last treatment round (in October 2019). During 2021, there were two treatment rounds, the first in March; hence the data collected in August correspond to five months after treatment. (Another treatment round took place immediately after our data collection in August 2021.) Both in 2020 and 2021, all participants were invited to a central gathering point in the community to participate in the studies aimed to determine the prevalence of O. volvulus microfilarial infection. All who consented to participate were skin-snipped following established protocols [ 27]. Briefly, a piece of cotton wool soaked in methylated spirit was used to clean both sides of the iliac crests of each person. Blood-free skin snips (approx. 2 mg) were taken from each individual using a sterilized 2-mm Holth corneoscleral punch (E1802, Holth Storz, Germany). Biopsies were weighed and then separately incubated in physiological saline in 96-well microtitration plates (Caplugs Evergreen 222-8052-R1K, USA) for 24 h. Microscopic examination to identify and detect O. volvulus microfilariae was performed.

Testing for Ov16 antibodies

During June 2021, all study participants were also invited to participate in serological investigations using an Ov16 Rapid Diagnostic Test (RDT, SD Bioline, the Republic of Korea) to determine their exposure to O. volvulus. The test was performed following the manufacturer's instructions. Briefly, the test cassette was labelled with the participant's identification number, and an identified finger was disinfected with an alcohol swab and pricked with the lancet provided. Blood was collected using a capillary tube and placed in the specimen well of the cassette. Four drops of assay diluent were also added to the assay diluent well. All RDT results were read after 20 min.

Therapeutic and study coverage

Given that in 2009 biannual CDTI started being rolled out in Ghana, we report therapeutic coverage data for the first and second treatment rounds in 2009 and 2010 for the study communities where available, calculated as the percent of population treated out of total population in the village (all ages). Where available, we also report therapeutic coverage at implementation unit (IU) level, from Ghana Health Service (GHS) records and the Expanded Special Project for Elimination of NTDs (ESPEN) Ghana portal for Tain and Wenchi, covering a period between 2007 and 2021. The treatment coverage recorded in this study corresponds to the number of people who reported having taken ivermectin in the last treatment round (October) of 2019 and the first treatment round (March) of 2021 divided by the total study population, expressed as a percentage. As the study population is only a fraction of the total population residing in the villages (Table 1), we refer to this coverage as the study coverage.

Statistical analysis

Continuous variables were summarized using the median and interquartile ranges, and frequencies and percentages were used for categorical variables. The prevalence of epilepsy was calculated by dividing the number of clinically confirmed epilepsy cases by the total number of individuals screened and multiplied by 100. The mean number of treatment rounds in which the participants reported to have taken ivermectin was calculated according to age group. The (crude) community prevalence of microfilarial infection and of Ov16 seropositivity were calculated as the number of positive cases (skin-snip positive or RDT positive) divided by the number examined, expressed as a percentage. 95% CI for prevalence values were calculated using the Wilson Score Interval [ 28]. All statistical analyses were performed using the statistical software Jamovi Desktop 2.3.19.0 (Open-source software, Sydney, Australia) and Graph Pad Prism 8 for macOS 8.2.1 (GraphPad Software, San Diego, CA, USA).

Results

Socio-demographic characteristics of participants

This study included a total of 971 participants (from 514 households) consisting of 500 (51.5%) females and 471 (48.5%) males. The median age of participants was 26 years [interquartile range (IQR): 15‒43]. A total of 853 (87.8%) participants reported farming as the main income-generating activity and 539 (55.5%) had lived in the community for ≥ 15 years (Table 1).

Coverage of ivermectin MDA in the study communities

Additional file 3: Table S1 and S2 present the therapeutic coverage values recorded by the community drug distributors (CDDs) for 2009-2010, and for 2019-2021, respectively. Those recorded in this study (study coverage) for the second treatment round in 2019 and the first treatment round in 2021 are presented in Table 3. There was no CDTI during 2020 due to the interruptions of MDA programmes during the COVID-19 pandemic. Figure 2 presents temporal variation in therapeutic coverage at IU level for Tain and Wenchi from 2007 to 2021. Data for 2011 and 2012 were not available. According to the ESPEN portal, CDTI was not delivered in 2013 (or not recorded), 2018, and as explained above, in 2020.

Temporal variation in treatment coverage for Tain and Wenchi implementation units (IUs) from 2007 to 2021. Data for 2007-2010 are from the Ghana Health Service (GHS); data for 2013-2021 are from the ESPEN Ghana portal. Data for 2011-2012 are not available. Treatment was not delivered in 2013 (or not recorded), 2018 and 2020. Dotted line indicates the minimal 65% coverage for elimination of onchocerciasis as a public health problem (Cov EPHP). Dashed line corresponds to enhanced 80% coverage for elimination (interruption) of transmission (Cov EOT)

Community prevalence of microfilaria infection and of Ov16 seropositivity

In November 2020 (one year after the last 2019 treatment round), the community prevalence of O. volvulus microfilariae (mf) varied between 4.5% (Abekwai 2) and 11% (Abekwai 3) in the Tain District, and between 2.4% (Subinso 2) and 18.3% (Johnykrom) in the Wenchi Municipality. Across all study communities, the overall mf prevalence was 10.3%. In August 2021 (five months after the treatment round in March), the values remained similar, with an overall mf prevalence of 9.9%. The community prevalence of Ov16 seropositivity ranged from 16.7% (Abekwai 2) to 42.5% (Kokomba) in Tain, and from 10.6% (Blibor) to 13.9% (Johnnykrom) in Wenchi. The overall Ov16 seroprevalence across the communities was 22.2% (29.2% in Tain and 11.9% in Wenchi). In Kwanware, the mf prevalence was 12.3% in 2020 and 11.4% in 2021 (Table 2). Among 34 children aged < 10 years, the prevalence of IgG4 antibodies to the Ov16 antigen was 11.8% (95% CI: 4.7-26.6%). The seropositive children were found in Kokomba (2), Johnykrom (1), and Kwanware (1).

In 2020, there was no Community Directed Treatment with Ivermectin because of the COVID-19 pandemic, therefore the data of November 2020 correspond to one year after the last treatment round in October 2019. The data collected in August 2021 correspond to five months after the first treatment round in March 2021.

Household survey to screen for persons suspected to have epilepsy

The results of the household screening survey to identify persons living with epilepsy (PWE) are presented in Table 3. Fifteen (1.5%, 95% CI: 0.0-1.0) participants answered 'Yes' when asked whether they were known to have epilepsy. In 5.3% households (27/514), it was reported that someone had previously died from epilepsy. Between 1.3‒2.6% had experienced various symptoms associated with epilepsy including sudden falls with the loss of consciousness, bladder control, foam at the mouth, absence(s) or sudden loss(es) of contact with the surroundings, uncontrollable twitching, strange sensations of seeing, hearing and odours. Overall, 63.2% of participants took ivermectin during the last distribution round in March 2021 and the mean number of rounds of ivermectin taken was 7.7 (range: 0-40).

Characteristics of the persons with confirmed epilepsy

From the first stage interviews, 20 suspected cases of epilepsy were identified. However, only 14 (70%) were confirmed to have epilepsy. Thus, the prevalence of epilepsy was 1.4% (95% CI: 1.0-2.0) (Table 4). The median age of the first seizure in PWE was 12 years (IQR: 6‒14). Most PWEs (92.9%) reported experiencing seizures in the last 5 years and 85.7% in the past 12 months. The most common seizure type was generalized seizures with loss of consciousness (85.7%) with 35.7% reporting a family history of seizures. The most common condition that could be considered as a potential cause of epilepsy was head injury with loss of consciousness (21.4%). The most common anti-seizure medication taken was carbamazepine (35.7%). Among PWE, 64.3% took ivermectin in the last round (March 2021) and 21.4% had never taken ivermectin before. The prevalence of O. volvulus microfilariae and Ov16 antibodies in PWE was 8.3% (1/12) and 14.3% (1/7), respectively.

Discussion

This study aimed at determining the prevalence and clinical characteristics of epilepsy in selected onchocerciasis-endemic communities in the Bono Region of Ghana. Among the study communities, the overall prevalence of O. volvulus infection (presence of skin microfilariae) was 10.3% in 2020, and 9.9% in 2021; the overall prevalence of IgG4 antibodies to the Ov16 antigen (Ov16 seroprevalence) was 22.2%, and 11.8% among children aged less than 10 years, indicating that these communities are still endemic for onchocerciasis. In particular, for the village of Kwanware in Wenchi, there is a good temporal record of the evolution of microfilarial prevalence: 48.1% in 1989 (at baseline), 15.6% in 2000 (towards the end of the OCP), 5.6% in 2012 and 29% in 2017 (under CDTI), and 12.3% in 2020 and 11.4% in 2021 (in the present study) (Additional file 3: Figure S1). This trajectory is likely shared by the remaining study villages and suggests that progress towards elimination of onchocerciasis transmission (EOT) has been slow despite the long history of control in the area [ 29]. Also, the lack of decline in mf prevalence five months after the first 2021 CDTI treatment round is of concern, and suggests that the community residents are not swallowing the ivermectin tablets (despite the good coverage records reported by the CDDs, Additional file 3: Table S2), or are experiencing very fast rates of skin repopulation by mf. Regarding the former, a study on compliance with ivermectin treatment in the study communities will be presented elsewhere. Regarding the latter, a previous study in Ghana (conducted in different communities also located in the middle belt of the country, including the Tain District) identified statistically significantly high mf repopulation rates in some villages which had been recognized as responding sub-optimally to ivermectin [ 30].

The prevalence of epilepsy in our study communities was 1.4%. This is similar to the median epilepsy prevalence in SSA [ 31] as well as the average prevalence of epilepsy in Ghana which is estimated at 1% of the population [ 32]. Expectedly, it is lower than the high epilepsy prevalence reported in onchocerciasis-endemic regions with high pre-control microfilarial prevalence and high ongoing onchocerciasis transmission intensity such as in certain areas in South Sudan (5.1%) [ 11], Cameroon (3.5% [ 33] and 7.8% [ 34], the Democratic Republic of the Congo (4.6% [ 35] and 3.3% [ 36]), and Tanzania (2.5%) [ 37].

This 1.4% prevalence in our study sites is also lower than the 2.9% prevalence for 'history of convulsions' reported by community workers in a 2010/2011 study in the demographic surveillance site in Kintampo, an onchocerciasis-endemic area 90‒120 km away from our study districts [ 20]. However, in Kintampo, after adjusting for attrition and the sensitivity of the screening method, the prevalence of active convulsive epilepsy was only 100.1/1000 (1%). However, given the differences in methodology and epilepsy definitions, we need to compare these epilepsy prevalence findings with great caution. Indeed, we used a two-step screening methodology while in Kintampo a three-step methodology was used which took into account only convulsive epilepsies.

Studies from Uganda [ 38, 39] and Cameroon [ 33, 34] have demonstrated that onchocerciasis control/elimination efforts are able to decrease the incidence of epilepsy in an onchocerciasis-endemic area. In the absence of pre-control epilepsy prevalence data, we were unable to demonstrate this in our study, but it is unlikely that the prevalence of OAE was initially high in the study area, or that it would have decreased to the levels observed from higher levels as a result of ivermectin MDA. From the available OCP data, the (standardized) baseline microfilarial prevalence in the Tain and Wenchi study area ranged from 39 to 54%, indicative of mesoendemicity. According to the logistic regression model presented by Pion et al. [ 40], the corresponding prevalence of OAE would have ranged between 0.6% and 1.2%. According to the EPIONCHO-IBM transmission dynamics model [ 41] (parameterized for OAE with data published by Chesnais et al. [ 9]), the prevalence of OAE would have ranged between 1% and 1.5% and the incidence would be approximately 0% after 25 years of ivermectin MDA in mesoendemic settings (Jacob Stapley, pers. comm.).

However, considering the close association between microfilarial prevalence and the prevalence of epilepsy [ 40], it is important that MDA efforts are improved in the study area in order to ensure that the elimination as a public health problem (EPHP) and EOT goals are achieved. The study recorded a relatively low coverage of ivermectin MDA (63.2% among the general study population and 64.3% among PWE) in 2021, which may be understandable due to the fact that this was the year that CDTI resumed after the COVID-19 pandemic in 2020. Long-term trends may be more informative of the epidemiological situation in the area (Fig. 2), with a number of years in which CDTI has been missed (or not recorded), and therapeutic coverage levels have not consistently reached and maintained the enhanced 80% value recommended for EOT [ 42] at the IU level. This likely explains why a relatively high prevalence of microfilaridermia persists in the communities (Table 2). A modelling study illustrated the microfilarial rebound that can take place even in long-term programmes when MDA is interrupted [ 43].

Although, ivermectin coverage has been somewhat variable in the area (Fig. 2), therapeutic coverage has, by and large, surpassed the minimum of 65% recommended for onchocerciasis EPHP [ 42]. However, the microfilarial prevalence in Tain and Wenchi are at approximately 10% in our study. Although, the coverage of MDA in our study communities is sub-optimal, it is higher than in Owabi in the Ashanti Region of Ghana, where 78.5% of study participants reported that they did not take ivermectin [ 44]. A study from the Upper Denkyira East Municipality, in the forest area of Ghana, demonstrated that between 2006 and 2013, there was a decline in the mean ivermectin compliance rate from 39% to 26% [ 45]. Apathy towards MDA programmes is one of the reasons for the low compliance with ivermectin intake. Therefore, there is a need for the National Onchocerciasis Elimination Programme to take immediate and proactive remedial steps to mitigate this challenge, especially as we race towards the EOT targets of 2030 proposed by the World Health Organization (WHO) in its 2021-2030 Roadmap on NTDs [ 46].

In addition to the interruptions in CDTI experienced both during the COVID-19 pandemic and before it, insufficient funding and human resources, and insufficient guidelines in the past 27 years, have likely hampered the implementation of the Ghana Onchocerciasis Elimination Programme (GOEP). The GOEP has also faced competition for resources from other health programmes, decreasing the buy-in of the government into onchocerciasis control activities [ 13].

This study had a number of limitations. Recall bias is one of them, as participants/parents/guardians were required to remember their health history and their ivermectin intake. To reduce recall bias, we asked participants to recall their participation in the latest MDA round (March 2021) only 4 months prior to the time when the questionnaires were administered, but we still asked them to try to recall the number of MDA rounds in which they had participated. It is possible that this might not truly reflect the coverage levels of previous years, and future studies should consider this limitation. It is also possible that subtle types of seizures such as absences and some focal seizures with conserved awareness were underreported. Moreover, in our study imaging and laboratory examinations to exclude other causes of epilepsy were not performed. Indeed, with over one-tenth of the population keeping pigs near their homes, other serological and imaging techniques would be required to determine the proportion of individuals with neurocysticercosis as a cause of epilepsy in these communities, and future studies should consider investigating this further. Understanding and mapping the co-endemicity of onchocerciasis and T. solium taeniasis/cysticercosis in relation to epilepsy in SSA is a pressing need.

Conclusions

The epilepsy prevalence in the Bono region was 1.4% which is similar to the median epilepsy prevalence in SSA. Also, O. volvulus microfilariae were found in only one of the 12 PWE tested during skin snip examination. Both findings mean that currently in the Bono region there is no appreciable OAE. However, despite 27 years of ivermectin administration, the overall mf prevalence in the community is still around 10%. Therefore, there is a need for the GOEP to strengthen and sustain its efforts to ensure that the gains of MDA are consolidated and improved to achieve the elimination of onchocerciasis and its associated morbidities, and importantly, to reach the 2030 goals proposed by the WHO [ 46].

Availability of data and materials

All the data are contained in the Tables, Figures, and Additional files.

Abbreviations

APOC:

African Programme for Onchocerciasis Control

CDTI:

Community-directed treatment with ivermectin

CDD:

Community drug distributor

CI :

Confidence interval

Cov EPHP:

Coverage for Elimination as Public Health Problem

Cov EOT:

Coverage for Elimination of Transmission

COVID-19:

Coronavirus disease 2019

EOT:

Elimination (interruption) of transmission

EPHP:

Elimination as a Public Health Problem

ESPEN:

Expanded Special Project for the Elimination of Neglected Tropical Diseases

GHS:

Ghana Health Service

GOEP:

Ghana Onchocerciasis Elimination Programme

ILAE:

International League Against Epilepsy

IU:

Implementation unit

LMIC:

Low- and middle-income countries

LF:

Lymphatic filariasis

MDA:

Mass drug administration

Mf:

Microfilariae

NTD:

Neglected Tropical Diseases

OAE:

Onchocerciasis-associated epilepsy

OCP:

Onchocerciasis Control Programme in West Africa

OR :

Odds ratio

PWE:

Persons living with epilepsy

RDT:

Rapid diagnostic test

REMO:

Rapid Epidemiological Mapping of Onchocerciasis

SIZ:

Special Intervention Zone

SSA:

Sub-Saharan Africa

WHO:

World Health Organization

References

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Acknowledgements

We thank all the staff and students of the Department of Biological Science and the Centre for Research in Applied Biology at the University of Energy and Natural Resources in Ghana who provided support in one way or the other to ensure the successful implementation of this research. We are especially grateful to the Director of the Tain District Health Directorate, Mr. Kennedy Ohene-Adjei, and Mr. Philip Yeboah for providing the coverage data for the Tain District from 2019 to 2021. We also acknowledge the efforts of the directors and staff of the Wenchi Municipal Health Directorate and the Subinso Health Center for their enormous contributions towards the study. Dr. Nana Kwadwo-Biritwum and Odame Asiedu shared the 2009-2010 coverage data. Our appreciation also goes to the chiefs and people of the study communities who partnered with us in this study. We would like to thank the referees who provided valuable comments on the original version of the manuscript and particularly the reviewer who shared an extensive knowledge of the study area and its history of control.

Funding

This publication was supported by a grant from the United States Agency for International Development (USAID) and UK FCDO from the British people (UK FCDO) through the Coalition for Operational Research on Neglected Tropical Diseases (COR-NTD) and administered by the African Research Network for Neglected Tropical Diseases (ARNTD). Its contents are solely the responsibility of the author(s) and do not necessarily represent the views of USAID, UK FCDO, COR-NTD, or the ARNTD. M-GB also acknowledges funding from the MRC Centre for Global Infectious Disease Analysis (MR/R015600/1), jointly funded by the UK Medical Research Council (MRC) and the UK Foreign, Commonwealth & Development Office (FCDO), under the MRC/FCDO Concordat agreement and is also part of the EDCTP2 programme supported by the European Union.

Author information

Authors and Affiliations

1. NeTroDis Research Group, Centre for Research in Applied Biology, School of Sciences, University of Energy and Natural Resources, Bono Region, Sunyani, Ghana

Kenneth Bentum Otabil, Blessing Ankrah, Emmanuel John Bart-Plange, Theophilus Nti Babae, Prince-Charles Kudzordzi & Vera Achiaa Darko

2. Department of Biological Science, School of Sciences, University of Energy and Natural Resources, Bono Region, Sunyani, Ghana

Kenneth Bentum Otabil & Raji Abdul Sakibu

3. Global Health Institute, University of Antwerp, Antwerp, Belgium

Kenneth Bentum Otabil, Joseph Nelson Siewe Fodjo & Robert Colebunders

4. Department of Medical Laboratory Science, School of Sciences, University of Energy and Natural Resources, Bono Region, Sunyani, Ghana

Emmanuel John Bart-Plange, Emmanuel Sam Donkoh, Fiona Amoabil Avarikame, Fredrick Obeng Ofori-Appiah & Daniel Antwi-Berko

5. STU Clinic, Sunyani Technical University, Bono Region, Sunyani, Ghana

Vera Achiaa Darko

6. Happy Family Hospital, Bono East Region, Nkoranza, Ghana

Joseph Ameyaw

7. Tain District Hospital, Bono East Region, Nsawkaw, Ghana

Joseph Gyekye Bamfo

8. Department of Infectious Disease Epidemiology, MRC Centre for Global Infectious Disease Analysis (MRC GIDA), and London Centre for Neglected Tropical Disease Research, School of Public Health, Imperial College London, London, UK

María-Gloria Basáñez

9. Department of Medical Microbiology, Experimental Parasitology Unit, Amsterdam University Medical Centres, Academic Medical Centre at the University of Amsterdam, Amsterdam, The Netherlands

Henk D. F. H. Schallig

Contributions

Conceptualization, methodology, formal analysis, investigation, data curation/analysis, visualization, writing and reviewing: KBO, DA-B, JNSF, M-GB, HDFHS, RC. Writing-original draft: KBO. Field and laboratory investigation, data curation, visualization: BA, EJB-P, ESD, FAA, FOO-A, TNB, P-CK, VAD, JA, JGB, M-GB. Data analysis, visualization, writing-review and editing; ASR, DA-B, JNSF, M-GB. Resources: M-GB. Supervision: M-GB, HDFHS, RC. Project administration: KBO, RC. Funding acquisition: KBO, M-GB, RC.

Corresponding author

Correspondence to Kenneth Bentum Otabil.

Ethics declarations

Ethics approval and consent to participate

This study received the ethical approval of the Committee for Human Research and Ethics of the University of Energy and Natural Resources, Sunyani, Ghana. All participants consented to participate by providing a signed/thumb-printed informed consent form.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

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Otabil, K.B., Ankrah, B., Bart-Plange, E.J. et al. Prevalence of epilepsy in the onchocerciasis endemic middle belt of Ghana after 27 years of mass drug administration with ivermectin. Infect Dis Poverty 12, 75 (2023). https://doi.org/10.1186/s40249-023-01117-9
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DOI: https://doi.org/10.1186/s40249-023-01117-9

Keywords

# data[].attributes.attachment_link.title
Prevalence of epilepsy in the onchocerciasis endemic middle belt of Ghana after 27 years of mass drug administration with ivermectin - Infectious Diseases of Poverty

# data[].attributes.attachment_link.description
Background In onchocerciasis-endemic areas with high ongoing Onchocerca volvulus transmission, a high prevalence of epilepsy has been reported. This study aimed to determine the prevalence and clinical characteristics of epilepsy in the Bono Region of Ghana following 27 years of implementation of ivermectin mass drug administration (MDA).

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Seizure European Journal (Epilepsy in Ghana Metropolis)

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Seizure European Journal (Epilepsy in Ghana Metropolis)