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Children's access to treatment for epilepsy: experience from the Lao People's Democratic Republic
  1. Hubert Barennes,
  2. Khouanheuane Sengkhamyong,
  3. Emercia M Sambany,
  4. Paulin N Koffi,
  5. Phetvongsinh Chivorakul,
  6. Gwenaelle Empis,
  7. Sébastien Clavel,
  8. Silaphet Somphavong,
  9. Nengyang Wangkou,
  10. Christian Rajaonarivo,
  11. Aina Harimanana
  1. Francophone Institute for Tropical Medicine, Vientiane, Lao PDR
  1. Correspondence to Dr H Barennes, Institut Francophone pour la Medecine Tropicale, IFMT BP 9519, Vientiane, Lao PDR; hubert.barennes{at}auf.org

Abstract

Epilepsy affects an estimated 10.5 million children worldwide, of whom 80% live in developing countries. The treatment gap is estimated at around 90% in the Lao People's Democratic Republic (Lao PDR). The present work analyses some of the reasons that could explain the low access to antiepileptic drugs (AED) for children with epilepsy in the Lao PDR. Epilepsy, the ‘mad pig disease’, is highly neglected. Traditional beliefs, fear and stigma are common among the general population and shared by 40% of health staff. Poor knowledge of the disease and its treatment, low trust in modern treatment, restricted access to AED and ignorance of long-term treatment explain the low access to AED. Improving understanding of epilepsy and its treatment, will improve the treatment gap for epileptic children in the Lao PDR.

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Introduction

Epilepsy, one of the most common neurological disorders, affects an estimated 10.5 million children worldwide.1 In developing countries, there is a peak in incidence of epilepsy in childhood,2 and children represent 80% of the 3.5 million new cases that are identified each year.1

The prevalence of epilepsy in these countries is usually higher than in developed ones. The median lifetime prevalence in Asia is estimated at 6 per 1000, which is lower than in developing countries in other parts of the world (15 per 1000 in sub-Saharan Africa and 18 per 1000 in Latin America).2 Worldwide, mortality among patients living with epilepsy (PWE) is two to three times higher than in the general population. Data are lacking for developing countries but it is considered to be much higher than in the industrialised countries.3 In the Lao People's Democratic Republic (Lao PDR) the prevalence of epilepsy is estimated to be 7.7 per 1000 population (95% CI 5.3 to 10.7 per 1000) and similar to that observed in Asian countries.2 4 The treatment gap, which is the difference between the number of people with active epilepsy and the number who are receiving appropriate treatment, is estimated as 90% of patients.5

Traditional beliefs, stigma and fear of epileptics are a major challenge for children living with epilepsy (CWE) in Lao PDR.6 7

CWE in developing countries have a poorer social integration than their peers and are often perceived as being different to normal people. As a result, CWE often do not attend school, or are excluded because of them.8 Long-term psychological problems in children may occur.8,,10 CWE are almost five times more likely to have psychiatric problems than the general population. Family and relatives also perceive the burden of their child's disease as being high.11 In this paper we report the experience of children's access to treatment for epilepsy in Lao PDR.

Lao

Lao PDR is a multiethnic and multilingual country with more than 45 languages for a population of 5.8 million inhabitants.12 After years of being a landlocked country sharing borders with Vietnam, Cambodia, Thailand, China and Myanmar, Lao PDR is rapidly becoming a land-linked country with the opening of roads and borders following the liberalisation of the economy since 1986. A total of 44% of the population live below the international poverty line of US$1.25 per day.12 Mortality for children alongside demographic data are illustrated in table 1.

Table 1

Lao PDR sociodemographic characteristics12

Health facilities consist of 4 central teaching and referral hospitals in Vientiane: 13 provincial hospitals, 127 district hospitals and about 750 health centres. All hospital beds are within the public health system with 0.9 hospital beds per 1000 inhabitants. Less than 50% of all health workers (8942) are in public health facilities.13 14 There are almost 3000 senior-level and mid-level medical staff but they are unfortunately mainly concentrated in urban areas.15 The overall number of health staff per 1000 inhabitants is only 0.53 which is well below the WHO target of 2.5. The majority of staff at district level are mid-level or low-level health workers with doctors representing only 6% of health staff at this level. Private healthcare services are growing (around 254 clinics and 1865 pharmacies) mainly in urban areas.13

Medical specialists are currently trained by various organisations focusing on local capacity building with international expertise (family medicine and paediatric residency programmes, master of tropical medicine and international health, master of public health, external support to the Faculty of Medical Sciences from bilateral or multilateral partners) or trained abroad.

Traditional perception of the disease

Traditional beliefs in relation to epilepsy result in a major problem for CWE in Lao. Epilepsy, the so-called ‘mad pig disease’, is thought to be caused by a variety of reasons including supernatural causes such as the price to pay for bad attitudes in the past, family misbehaviour, spirits, cutting down trees, constructing houses in a wrong position, transgression of sexual taboos, etc.16 Many people consider epilepsy to be a transmissible disease that one can get by touching the saliva of patients, or by transmission from mother to child.6 People are afraid of seizures and of PWE. During seizures they limit contact with the patient in case they touch the saliva and get sick. They avoid sharing meals, avoid working with and isolate CWE outside of the village.16 Traditional beliefs of the disease explain why patients rarely seek care from doctors and refer more to traditional care or religious sacrifice.6 16 17

Epilepsy is considered incurable. The population is unaware of any effective treatment available at health centres. People first resort to various traditional remedies including prayers, infusions, massages, traditional healers, offerings to monks, religious sacrifices, etc. Reports of violence are rare, but not exceptional. In 2008 a child was severely burned after being ‘purified in the fire’ in Attapeu Province by the shaman. The Lao population does not believe in long-term treatment. People will discontinue treatment if not cured within 3 days. This traditional belief represents a strong limiting factor for any long-term treatment in Laos. Non-compliant PWE had the highest rate of death during the 2 years of pilot drug implementation.18

Traditional beliefs and poor knowledge of epilepsy among health staff

Unfortunately, many of the misconceptions about epilepsy that are prevalent in the local population are also present in health professionals. We have found major problems in relation to attitudes towards epilepsy with doctors in Lao. In 2009 we performed a survey of doctors working with children in different parts of the country. The results from 47 of the doctors who completed a questionnaire about epilepsy are shown in table 2. Stigma was relatively low, but reached 30% when regarding the matter of marrying a PWE. One-third of the doctors treating children had never diagnosed epilepsy and would not use an antiepileptic drug (AED). Only three doctors could name more than two AEDs. None could quote the correct dosage of phenobarbital for children. Only 10 of the 47 doctors (21%) had received any training in epilepsy.

Table 2

Perception and knowledge of epilepsy among doctors working in paediatric wards in 2009

Lack of availability of qualified health staff and health facilities

There is one trained neurologist, but without an inpatient basis, working in Vientiane Hospital, a team of psychiatrists in one hospital in Vientiane and one doctor trained in neurology in the south of Lao PDR. There is no neurological ward in Lao PDR and funding is scarce. The very few paediatricians had not until recently been specifically trained on epilepsy.

According to a WHO consultant and interviewees, psychiatrists are in charge of epilepsy in five provinces (Khammuan, Luang Prabang, Udomxai, Savannakhet and Vientiane) for adults and children. From 2005 to 2008 there has only been a single 1-day training session (of 10–15 doctors, each) on epilepsy in 10 provinces of Lao PDR with the support of WHO (included in a 4-day training course on mental health).

Investigational material is scarce and concentrated in Vientiane, the capital of Lao.

Lack of availability of drugs

Six generics of AEDs (phenobarbital, clonazepam, diazepam, carbamazepine, phenytoin and valproic acid) are listed in the essential drugs list of the Lao PDR (unpublished report; 13th edition, April 2003, Lao PDR Ministry of Health).

Phenobarbital is the preferred treatment. In 2009 there was a shortage of phenobarbital all over the country and patients had to switch to other drugs, with some severe consequences reported when no other drugs was available. The number of CWE who deteriorated could not be determined.

The distribution of phenobarbital is strictly under the control of the provincial hospitals, district hospitals and private pharmacies of grade 1 (with a graduate pharmacist) and grade 2 (with a health professional).19 Phenobarbital is not allowed to be sold in the lower category pharmacies (grade 3), which are the pharmacies in virtually all of the rural Lao PDR. This is a major limitation for the accessibility of phenobarbital in rural parts of the country. Phenobarbital was only available in 7% of 79 village health centres, 12.5% of 80 district hospitals and 39% of 79 Province hospitals during a randomised survey involving 351 Lao heath staff in 2009.

Outside of Vientiane, diazepam and phenytoin were the only other AEDs on sale in the province.

Diazepam is the only drug widely available throughout the country. It is often considered as the only treatment for epilepsy.16 19 Despite being the preferred treatment for epilepsy, phenobarbital is not well known even by doctors and its availability should be addressed. Additionally, no drug is currently available in paediatric form. In 2004, phenobarbital was only available in 53% of urban higher category pharmacies surveyed in Vientiane municipality.19 Diazepam was more widely available in 88% of the pharmacies. The lack of availability of long-term treatment may explain the poor confidence that population and health staff place in the current diazepam short-term treatment.

According to Lao Food and Drug Authorities there are no restrictions on providing phenobarbital to hospitals and districts. Health facilities have to order AEDs taking into account the number of expected patients per year. The main limiting factor is the low rate of patients with epilepsy seeking care in the health facilities and transport to get the drugs.

Among the few compliant patients, families adopt very different paths to obtain phenobarbital. After the end of the pilot intervention in rural Lao PDR, some purchase it from health staff, often at double the price, others buy it in Vientiane (120 km), while a few others get it from the nearest district hospital (10 km).18 On the border of China and Thailand, people often cross the border to get their treatment.

Lack of prescription of AED

Unfortunately, neither the population nor many health staff are aware of a long-term treatment for epilepsy. A short course of diazepam is the most commonly used regime in the treatment of seizures.

During a 2-week systematic screening of AED at Mahosot, the main hospital in Vientiane, an average of 15 prescriptions for epilepsy were delivered each week out of 7262 prescriptions. Of the 15, 7 (46%) of these prescriptions contained phenobarbital.

Cost

The direct cost of annual treatment with phenobarbital was previously estimated to be around 25 US$, which is a heavy financial burden for a population with a gross national income per capita of US$580.12 19 The total cost of treatment mainly depends on the cost of getting to a health centre (transportation costs, etc), which is often far more expensive than the drug itself.

Access to healthcare

Patients with epilepsy (including children) are mainly treated in psychiatric departments. This explains the low attendance reported in paediatric wards. This may increase the confusion with epilepsy as a mental disease in the population. However, the mental health network in Lao PDR is also not very influential, and is therefore neglected. Amphetamines and opium addiction are the only neurology fields currently addressed by health authorities.

During a retrospective investigation of PWE cared for in Vientiane hospitals in 2008, out of 2700 expected active epileptics we found only 163 new cases were attending the psychiatric ward, and 53 children attended the paediatric emergency unit (that is, 8% of expected patients). The only neurologist in Vientiane working in one of the main hospitals reported less than 1–2 cases per month.

During a randomised survey of health staff in health centres in 2009, 1 patient with epilepsy (without statement on whether the patient was an adult or child) was seen every 1.5 months across a total of 351 health centres. Less than half the doctors (94/193, 49%) diagnosed epilepsy over a mean 9.75 years in the health facility.

About two-thirds of the health staff in paediatric wards (31/47, 66%) diagnosed epilepsy during a mean 9.96 years in the health facility (table 2). Among them, only nine (19%) asked patients with epilepsy to come back for a follow-up.

Few surveys address the misperception among health staff though limited knowledge on epilepsy and AED seem common in most developing countries.20 In Lao, guidelines concerning epilepsy are not available. The lack of guidelines for health practitioners leads health practitioners to treat epilepsy according to their own experiences.21

Treatment gap

The low rate of treatment provided to those in need (or treatment gap) is the main determinant of the higher burden in low-income countries.22 The burden of epilepsy for a family and the country is less if the epilepsy is treated from an early age.23 The epilepsy treatment gap is high in developing countries,24 25 and even more in rural areas.26

This ‘treatment gap’ is influenced by factors such as limited knowledge, poverty, cultural beliefs, stigma, poor health delivery infrastructure and the shortage of trained healthcare workers.

In developing countries, patients with epilepsy encounter several significant barriers to adequate treatment and are more often managed according to local ethnic, racial, religious, economic, educational and cultural diversities.27 Some of the reasons for the treatment gap are summarised in table 3.

Table 3

Reasons for the treatment gap in relation to children with epilepsy

In rural areas, of 33 PWE cases confirmed during the prevalence survey in 2004, only 1 (3.0%) was appropriately treated with phenobarbitone.4 Of 46 active epilepsy cases detected by the pilot programme in rural areas 2005, only 4 (9%) had received an AED before.18 Hence the treatment gap has been estimated at over 90%, with probable discrepancy between urban and rural areas.5

The problems in Lao are similar to other low-income countries. They include limited human resources for health issues: low salaries and wages (the average annual salary for health workers is estimated to be US$405), inappropriate distribution of qualified staff among geographic and health system levels, limited numbers of qualified health workers and low staff productivity.15

There is evidence that reducing or stopping the recurrence of seizures will ease the family's burden and the psychological consequences on the child. The risk of the family being highly affected by the epilepsy decreased by about 20% for each additional year following diagnosis of a seizure disorder and by about 40% for each additional month since the last seizure.11 It is considered that a longer period after diagnosis of the disorder may have led to better acceptance of the illness and parental encouragement of autonomy.11

Recent initiatives

Various strategies to bridge the treatment gap of epilepsy were adopted in Asian countries (China, India) and in developing countries in the last decades.2 28 29 They showed the effectiveness of low-cost interventions at community level using primary healthcare nurses, guidelines for medical community and consumers, trainings, availability of trained manpower and low-cost drugs.30

After years of non-activity against epilepsy in Lao, recent researches conducted by Institut Francophone pour la Medecine Tropicale (IFMT) and Institut d'Epidémiologie et de Neurologie Tropicale (IENT) opened the door to improving access to AEDs in the country.5 It also provided insights about epilepsy prevention and risk factors. Head trauma, family history of epilepsy and the use of human faeces to fertilise domestic vegetable gardens were associated with epilepsy.31 The role of taeniasis and cysticercosis, though highly suspected in Laos (epilepsy is called mad pig disease, and PWE respect strong food taboos on pork consumption), could not be documented in this case-control survey (cysticercosis seroprevalence 4.8% in control group, 0 in epilepsy group)31 as in other developing countries.29 31

From 2006 to 2007 IFMT and Handicap International conducted a pilot study for implementing treatment of PWE in a rural area.18 Since then Handicap International and Basic Needs have performed community follow-up of PWE in 2 rural areas accounting for up to 116 PWE (including 30 CWE) in 2009. Unfortunately, the sustainability of these projects is not yet secured.

In 2008 we started a project to improve access to epileptics drugs and promoting awareness, education and training.5 One key factor in reducing the treatment gap in epilepsy is to improve education about epilepsy.24 In 2008 and 2009 we conducted the first two scientific regional meetings on epilepsy in Vientiane in order to increase awareness of the disease. Training initiatives were also started in 2008–2009.

An important development is the completion of graduation, after 2 years of training, of more than 50 Lao paediatricians who are taking up posts in paediatric wards throughout the country. They represent an important opportunity to improve awareness of the disease and a better access to modern treatment for CWE. The population is feeling more confident in these child specialists and attendance at paediatric wards is increasing.

Conclusions

Traditional beliefs and practices are highly prevalent among the population and are also shared by some health staff in the Lao PDR. The low knowledge and understanding of epilepsy explain the very limited access to treatment. Epilepsy is a neglected disease in the Lao PDR. CWE have a low access to modern treatment and, until recently, were not attended by a trained paediatrician.

Phenobarbital, the preferred essential drug for epilepsy, is not easily available throughout the country. The recent graduation of paediatricians in Lao PDR represents an important hope for children to have access to an adequate treatment together with an ongoing project to improve epilepsy awareness and access to treatment in the Lao PDR.

Acknowledgments

We thank the IFMT students of P9 and P10 class IFMT and IFMT staff and teachers, and all the people who participated in collecting data during the surveys and all the participating families, patients and doctors and Lao authorities. We thank Percy Aaron for revising the draft. We also thank Institut d'Epidémiologie et de Neurologie Tropicale (IENT) (Limoges, France) (PM Preux), Swiss Tropical Institute (P Odermatt), Health Frontier, Service Fraternel d'Entraide, University of Malaysia (C T Tan) for their support and collaboration, the Lao national and regional health authorities for their support and IFMT, Sanofi Aventis Access to Medicines, which funded the surveys.

References

Footnotes

  • Funding Agence Universitaire de la Francophonie (AUF), Institut Francophone pour la Médecine Tropicale (IFMT), Sanofi Aventis Access to Medicines.

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the National Ethical Review Board of Laos.

  • Provenance and peer review Commissioned; externally peer reviewed.

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