The prevalence and treatment gap in epilepsy in China: An ILAE/IBE/WHO study
Wang WZ, Wu JZ, Wang DS, Dai XY, Yang B, Wang TP, Yuan CL, et al.;
Commented by , 24 Jun 2003
Background
The majority of the about 50 million people who suffer from epilepsy worldwide do not receive an appropriate treatment. Assessing the magnitude of the treatment gap in different regions is an important first step in addressing this problem.
Aim
To determine the size of the treatment gap in People's Republic of China.
Methods
A questionnaire was presented by physicians and healthworkers to 55,616 individuals from selected from random clusters in 6 provinces of China. The provinces were chosen because they represent different scenarios.
The questionnaire (a WHO instrument validated in China) identified possible cases of epilepsy. After the questionnaire was completed, a neurologist visited each person who had a positive response to any question aimed at probing the possibility of epilepsy.
Confirmation of diagnosis was done by the neurologist, mainly based on medical history.
Definitions used
- Active epilepsy: 2 or more unprovoked seizures in the 12 months preceding identification
- Untreated epilepsy: Active epilepsy not treated with an appropriate antiepileptic drug (AED) in the week preceding identification
- Appropriate treatment: Diagnosis and management of seizures and underlying causes according to national standards, using AEDs and/or surgery
- Treatment gap: Difference between number of people with active epilepsy and those receiving adequate treatment.
Results
Of 55,616 people screened, 869 (1.6%) yielded a positive signal in the questionnaire. After review by a neurologist, 387 (0.7%) were confirmed as definite cases of epilepsy and 257 (0.46%) fitted the definition of active epilepsy.
Of the confirmed cases, 80% had primary or secondarily generalised convulsive seizures.
Of the 387 persons with confirmed epilepsy, 157 (41%) had not received any treatment and 134 (35%) had only received irregular treatment.
Of the 257 persons with active epilepsy, 161 (63%) did not receive reasonable treatment in the week before the survey.
The size of the treatment gap in people with active epilepsy ranged, in different provinces, from 47 to 77%.
Discussion
According to WHO estimates of disability-adjusted life years, epilepsy accounts for 1% of the world’s burden of disease, the same as lung cancer in men or breast cancer in women (Murray CJL, Lopez AD, eds. Global Comparative Assessment in the Health sector: Disease Burden, Expenditures, and Intervention Packages. Geneva: WHO, 1994). This is largely due to the fact that 80 to 90% of people with epilepsy live in emerging countries, where most do not receive effective treatments.
This well conducted door-to-door survey shows that the lifetime prevalence of epilepsy in China is almost 50% higher and the treatment gap over 30% greater than originally suspected. Based on these findings, China is home to about 9 million people with epilepsy and, of these, almost 6 million have uncontrolled seizures.
Given the huge advances in diagnostic and therapeutic tools in the last 20 years, it is shocking that over 60% of people with active epilepsy in the largest country of the world do not receive any treatment. Most probably, this is due to local misperceptions about the nature of the disease. If epilepsy is stigmatised, people are unlikely to admit that they have epilepsy and to know that adequate treatment exists.
This study is important because it identifies epilepsy as a high-priority concern for health authorities in China. Relatively inexpensive interventions such as public education to dispel stigma and professional training to identify people with epilepsy and direct them to medical centres could have a huge impact on the Chinese treatment gap (1).
There are two issues on which the authors do not comment or provide data. One is the extent to which traditional medicine is used to treat epilepsy in China, particularly in rural areas. The second is the great opportunity that China offers to investigate the natural history of untreated epilepsy and the impact on treatment on patients with a long standing history of active epilepsy. ILAE, IBE and WHO are investing resources for further projects in China, and they might consider these issues among objectives for future initiatives.
Reference
Engel J Jr. Bringing epilepsy out of the shadows. Neurology 2003; 60; 1412