Currently, around 1 in 200 children are diagnosed with epilepsy (Epilepsy Society, 2018) a neurological condition that may result in several aspects of their life other than physical health being affected. To control symptoms and improve overall quality of life, the main treatment strategy involves the use anti-epileptic drugs (AEDs). With adequate treatment, it is possible for some children to go into complete remission (Nair, Thomas, 2014). However, for many others this remains a lifelong condition highlighting the importance of ensuring adherence, and appropriateness of AED selection. However, epilepsy is not only “a medical condition, but also incorporates sociological, economical, and cultural dimensions” (WHO, 2004). Thus, to ensure adherence, a more holistic consideration of other factors that may potentiate seizures or affect good medicines-taking behaviour is necessary. In many cases, a child’s socioeconomic status amongst other factors such as age, issues with stigma and prejudice, and gender, could either increase prevalence of seizures or potentially present as a barrier to the optimisation of AEDs. Thus, must collectively be considered if the successful management of paediatric epilepsy is to be achieved.
Principally, the symptoms associated with different types of paediatric epilepsy can be controlled by observing good medicines-taking behaviour. Nonetheless, as stated previously, the treatment of potentially long-term conditions such as epilepsy is complex in which poor adherence to AEDs could be the consequence of several factors. In some cases, it may be the result of a child’s socioeconomic status (SES). Children with epilepsy vary in SES; made up of “a combination of their education, family’s earnings, and occupation” (APA, 2018). Those of a lower SES are more likely to be faced with health inequalities. For instance, such children are more likely to reside in low-income countries (APA, 2018), which may result in lesser expenditure on healthcare (Jost et al., 2016). This presents as an issue as AEDs; currently the leading treatment for most types of paediatric epilepsy may no longer be deemed an ‘essential’ and thus, only made available through private purchase (Scott et al., 2001). Continuation of treatment is an important determinant of medication adherence however, the reduced income associated with being of a lower SES and the high expense of such treatment, could mean that it is no longer considered an option (Das, et al., 2007). Consequently, we see an increased likelihood in hospital admissions due to re-occurrence of seizures. According to NICE, hospital admissions in 2009 because of non-adherence cost the NHS up £196 million (NICE, 2009). Such costs in areas of a lower SES could further affect accessibility of AEDs. Paediatric epilepsy is one that is complex with symptoms varying between the different forms. A reduced expenditure in healthcare may result in a decline in the number of healthcare professionals suitably qualified for the management of paediatric epilepsy (WHO, 2004). This may result in inappropriate AED selection as a result of inadequate knowledge. For example, sodium valproate may be prescribed, even though its use in “girls of child-bearing age” (Appleton et al., 1999) is frequently avoided. This is due to the extensive research conducted on the long-term effects of the drug which showed it to result in adverse cognitive side-effects in future unborn children (Appleton et al., 1999).
A patient’s SES can also influence the development of epilepsy common particularly during childhood. One reason may be the result of brain injury as a result of physical violence. Children of a lower SES are more likely to be subjected to abuse, with studies showing children of families earning under ‘$15,000 being over 22 times more likely to be injured” (Houshyar, 2014) This is often attributed to but not excused by stress associated with poverty, or increase likelihood of substance abuse by parents. The transfer of electrical signals in the brain following such injury becomes affected resulting in seizures (Headway, 2013). The severity of the damage is made apparent in the time taken for symptoms arise in which seizures can be triggered as soon as within a week (Headway, 2013). Additionally, increased diagnosis could be the result of higher transmission rates of infectious disease in areas of low-income. For example, cerebral malaria common in these areas can initiate febrile convulsions, triggered by fever associated with the disease (Sander JW, 2004). In such cases, epilepsy in these children occurs secondary to malaria. As a result, programmes such as the World Health Organizations could decrease the total number of children infected via initiatives such as vector control (WHO, 2018). This includes the provision of free mosquito nets, vaccines, and insecticide sprays (WHO, 2018) to all people at risk, reducing incidence by reducing the number of children that contract the disease.
For a patient to be deemed adherent, they must administer medication in such a way that “corresponds with agreed recommendations from a health care provider” (WHO, Sabaté E). However, even with the advancements made in the attempt to increase knowledge and alter attitudes on epilepsy, many children remain stigmatized. Misperceptions on the condition could be the result of a multitude of factors including cultural beliefs and “inadequate knowledge (Jacoby, 2011) For instance, in many parts of the world epileptic seizures in children is commonly thought to be the result of possession by ‘evil spirits’- (Carrazana et al.,1999). This encompasses this idea of such cultures observing a ‘personalistic health-belief system’. Common to many areas, this is the idea of conditions such as epilepsy possibly being the result of ‘supernatural forces’ (Carteret, 2011). Such cultural beliefs of carers can impact the care received by these children, who may choose to consult ‘traditional healers’ and use “folk remedies” (Carteret, 2011) as an alternative to modern treatment. This may have other implications as symptoms which are no longer controlled could result in further injury, such as head wounds, burns, and in more severe cases mortality (Baker, Eatock, 2007) emphasizing the importance of alleviating stigma by increasing understanding. One way this can be achieved is through the recruitment of epilepsy awareness programmes in schools to educate students on epilepsy, dispelling any associated myths via interactive assemblies (Kelsi, 2016). This significance of enhancing knowledge worldwide is further highlighted by the outcome of a study conducted in the USA, which showed how misperceptions surrounding epilepsy meant a higher proportion of students were likely to be bullied (Austin, Jacoby, 2007). Such exclusion from peers and in some cases teachers, could vastly affect mental health sometimes resulting in depression (Tong et al., 2011) which in turn, may affect medicines taking-behaviour. Older children who have increased autonomy over treatment may be affected in particular, as they may begin to withdraw as part of the many symptoms of depression from support systems such as friends and family (DiMatteo, 2000). Finally, the stigma attached to epilepsy can affect optimisation of treatment as it may result in concealment of the condition. Studies have illustrated that this could even extend as far as some carers failing to take their children to check-ups (Thomas, Nair, 2011), thus impeding treatment. The desire to conceal a child’s epilepsy could also lead to the withdrawal of children from school which could see them underperform as a result (WHO,2004). The array of skills learnt within a classroom can have a profound effect on treatment. For example, increased proficiency in literacy as a child grows older could result in greater accessibility and understanding of information made available, thus avoiding treatment cessation potentially due to an unawareness of the effects of non-adherence (Radhakrishnan, 2009).
The development of epilepsy is not restricted to any one age or gender. However, statistics show an increased incidence during childhood between the ages of 0-16 years. Additionally, for some epilepsy subtypes we see a greater association with women. There have been countless studies conducted on the potential causes of increased susceptibility in which for this form, a genetic link has been established. Mutations of the PCDH19 gene detected predominantly via investigations on blood samples (Kiriakopoulos MD, 2015) have a 50% chance of being inherited if the mother has the mutation (PCDH19 Alliance, 2016), or occur de novo; these are mutations that arise for the “first time in a family member" (NIH, N.D.). In both cases however, such mutations can lead to the development PCDH19 epilepsy, a form reported to be ‘limited to females’ (Lotte, 2016). The PCDH19 gene encodes for the protocadherin 19 protein which plays a role in the inhibition of glutaminergic neurotransmission via stimulation of GABAergic neurons. The excessive firing of glutaminergic neurons results in the release glutamate responsible for the triggering of seizures (Dibbens, Tarpey, 2008). Thus, mutations in the gene can increase reoccurrence of seizures. With PCDH19 epilepsy, seizures occur at a young age between “3 months to 3 years old most commonly in clusters” (Lotte, 2016). It is important to note that whilst this type of gene mutation results in an increased susceptibility for PCDH19 epilepsy, external factors such as fevers (Epilepsy Foundation, 2018) can also trigger and influence seizure frequency. The seizures associated can be quite severe in nature however, they may not be the only symptom of PCDH19 epilepsy. Such seizures can sometimes be accompanied by behavioural problems such as aggression (Lotte, 2016) amongst other symptoms thus, this form of epilepsy is said to be an epilepsy syndrome.
Treatment for this type of epilepsy is complex with research on the effectiveness of prescribed medication revealing the condition to be “pharmaco-resistant” (Lotte et al., 2016) during the early stages. Response to AEDs such as benzodiazepines which have a similar mechanism of action as the protocadherin 19 protein, does improve as the child grows older. This is made evident in the eventual control of seizures (Epilepsy Foundation, 2018), once again reinforcing this idea of the significance of observing good medicines-taking behaviour. In other cases where AEDs remain ineffective, other treatment methods for PCDH19 epilepsy include observing a ketogenic diet. This is a specialized diet which involves the consuming of foods that are “high in fat and low in carbohydrate” (Epilepsy Research UK, 2014). This reduction in carbohydrate level results in the production of ketones utilised by the brain, enabling it “to sustain energy such as glucose necessary to become less susceptible to seizure triggers” (Wood, N.d). Nonetheless, adherence to this treatment method could be affected by an array of factors including patient’s SES. Success of this treatment method requires patients with epilepsy to work closely with healthcare professionals (Epilepsy research UK, 2014). As stated earlier in this essay, those of a lower SES are likely to have reduced income which may affect continuation of care. For instance, patients of a lower SES tend to live in more rural areas of a greater distance (Meinardi et al., 2001; Mbuba et al., 2008) from medical centres and hospitals thus, the costs associated with travel could hinder attendance.
In the case of infants and younger children, adherence to medication one could argue is predominantly determined by parent/carers. However, this may be affected if children themselves are not compliant possibly because of medication taste or appearance. For example, lamotrigine used in the treatment of both generalised and partial seizures can have a bitter after-taste, potentially decreasing patient compliance. Lamotrigine exists in several forms. In the case of younger children where swallowing a solid tablet may result in choking, alternatives such as dispersible forms are considered. Therefore, it is recommended that dispersible forms are mixed with diluted juice to help improve both flavour and ultimately compliance. Moreover, with children, a large amount of their time is spent at school in which AEDs may need to be administered during these hours (DoE, 2015. Thus, it is important that an agreed healthcare plan between carers and teachers is established on how to administer medication and instructions provided on what to do should a seizure occur. A consideration of some of the side-effects that may accompany some AEDs (WHO,2002) such as reduced concentration, one common to lamotrigine, is also necessary as in some cases it may be perceived by teachers as “laziness” (WHO, 2002). This may act as deterrent to children, resulting in reduced compliance during school hours.
The effects of the different forms of paediatric epilepsy when left untreated can be detrimental not only to a child’s health, but also other areas such as their social life, and education, which in turn could influence future adherence. By first establishing the form of epilepsy a child has using diagnostic techniques such as EEGs, and potential triggers of seizures, healthcare professionals can begin to generate a tailored treatment plan to help manage symptoms. Currently, the main treatment method is the use of AEDs with alternative strategies for when recommended treatment fails. Nonetheless, for the treatment of any condition to be successful patients must first ensure adherence. As discussed earlier, this can be affected by a multitude of factors. This emphasises the importance of considering the different aspects that may affect medicines taking-behaviour in each individual patient, as without doing so, factors that may affect adherence will not have been remedied and the symptoms associated with paediatric epilepsy exacerbated.