The socioeconomic burden of seizure disorders is considerable, especially in resource- poor countries (Anand, Siraz-Ul, & Suresh, 2004; Hong et al., 2009; Mosser, Schmutzhard, & Winkler, 2007). The Institute of Medicine describes the cost burden of epilepsy in terms of “the direct costs of health and social services (e.g., costs related to physician visits, hospital use, seizure medications, counselling, rehabilitation, training) and the indirect costs related to lost productivity, reduced functioning, and early mortality” (2012, p. 208). Similarly, PNES causes direct and indirect costs by placing a heavy burden on emergency and nonemergency healthcare services, and on the economy as a whole (Ahmedani et al., 2013; Asadi-Pooya & Emami, 2013; Martin, Gilliam, Kilgore, Faught, & Kuzniecky, 1998). Cost factors include pre-diagnosis costs,
tertiary care, AED use, comorbid medical and psychiatric conditions and employment and financial assistance (Hamilton et al., 2010).
Taking into consideration that the average time to reach a definitive PNES diagnosis is 7.2 years, considerable costs are incurred over an extended period for a large number of tests, procedures and treatments (Reuber et al., 2002). Martin et al. (1998) reported a mean
expenditure of USD 8156 per PNES patient before diagnosis, which decreased to USD 1 306 after PNES was diagnosed, an 84 per cent average reduction. Similarly, clinic visits declined by about 80 per cent, diagnostic procedures went from 55 to 14, emergency room visits dropped by 97 per cent, laboratory testing by 80 per cent, diagnostic testing by an average of 76 per cent and medication by 69 per cent (Martin et al., 1998). Although the economic impact of PNES in the USA had not been formally established at that time, it was estimated that “lifetime dollars costs per patient cohort year for a PNES group could range from USD 110 million to USD 920 million” (Martin et al., 1998, p. 385). Razvi, Mulhern, and Duncan (2012, p. 7), “performed a 1- year prospective audit of the use of a group of PNES-related health-care items in patients with newly diagnosed (mean duration: 7.3 months) PNES from PNES onset to diagnosis and from diagnosis to six months post diagnosis.” The authors reported a 94 per cent reduction in emergency department visits, a 100 per cent reduction in GP visits, a 100 per cent reduction in hospital admissions, and a 100 per cent reduction in EEGs. In another study, overall costs
dropped from a mean of USD 4 567 in the 12-month period before PNES diagnosis to an average of USD 2 783 in the 12-months period after the diagnosis of PNES (Ahmedani et al., 2013). In addition, a study conducted on the long-term usage of healthcare services by 188 PNES patients, 5 to 10 years after diagnosis, reported reductions in healthcare utilization across several services (Duncan, Graham, Oto, et al., 2014). However, the same study indicated that only 22.8 per cent of participants were employed at the 5 to 10 years follow-up and that antidepressant usage increased from 23.9 to 39.5 per cent in the same period (Duncan, Graham, Oto, et al., 2014).
It is hard to estimate the overall economic burden of ES as it encompasses services across different settings of care and treatment approaches (Institute of Medicine, 2012). Costs associated with the management of ES fluctuate during the course of the disorder and depend on the type of ES involved, with direct costs reaching a peak during initial onset and diagnosis and decreasing as the seizures are controlled (Institute of Medicine, 2012). A study based on a retrospective review of cost-of-illness studies across 28 European countries found that the total cost per ES case ranged between €2,000 and €11,500 (Pugliatti, Beghi, Forsgren, Ekman, & Sobocki, 2007). Fifty-five per cent of the total epilepsy cost, which was €15.5 billion in 2004, related to indirect costs with direct costs making up 18 per cent (Pugliatti et al., 2007).
Outpatient care dominated the healthcare costs at 47 per cent and AED treatment comprised 15 per cent at €400 million (Pugliatti et al., 2007). A similar cost-of-illness study conducted in
China stated that the mean annual cost for ES accounted for more than half the mean annual income of Chinese patients at a total of USD 773 per annum per patient (Hong et al., 2009). The authors reported a direct cost of USD 372 per year per patient, nonmedical direct costs of USD 111 and loss of productivity at USD 289 (Hong et al., 2009). In Tanzania it was found that hospital costs for ES alone ranged between USD 20.2 and USD 284.4 for a country where the national gross product per capita was reported as USD 280 in 2002 (Mosser et al., 2007). In South Africa it is estimated that the overall annual out-of-pocket cost for ES treatment at public health facilities amounts to USD 58.41 although transportation costs and waiting times
contributed significantly to indirect costs of treatment (R. G. Wagner et al., 2016).
Even though very little is known about the overall impact of seizures in Namibia, it is quite clear from the literature that seizure diagnosis results in substantial cost for the healthcare infrastructure and the utilization of services to treat patients with seizures. This combined with the economic impact of unemployment and disability benefits further increases the financial burden with respect to seizure disorders.
It is evident from the literature discussed that much effort is expended on research regarding seizures from the perspective of the patient and specific challenges encountered in the diagnosis and treatment of these disorders. Although it is important to identify the factors that contribute to the development and maintenance of seizures, it is equally important to
acknowledge the role of the service providers in providing care for this disorder (McMillan et al., 2014). However, few studies focus exclusively on evidence-based management pathways, information about health systems and the perceptions and frustrations encountered by HCPs in the management of specifically PNES (Mayor, Smith, & Reuber, 2011; Valente, Rzezak, & LaFrance Jr., 2015). The only studies that explored the existing healthcare infrastructure and strategic health practices used for PNES in specific countries were conducted in the USA, Chile, UK and Brazil (LaFrance Jr. et al., 2012; Mayor, Smith, & Reuber, 2011; Valente et al., 2015). Although studies on ES in developing countries are more readily available, no studies have been performed in Namibia (Kvalsund & Birbeck, 2012; Mbuba et al., 2012; R. G. Wagner et al., 2016). There is a need to explore the perceptions and experiences of people who render services to people with seizures in the context of current healthcare practices and infrastructure that may influence seizure care in a developing country such as Namibia.