Table 1.
Measures and interventions to decrease epilepsy stigma
| Recommended Intervention | Aim | How? |
|---|---|---|
| Epilepsy awareness campaign, with emphasis on OAE | Improve knowledge, decrease stigma |
- Organize information campaign: locally, nationally, and internationally - Main message: Epilepsy is a non-contagious brain disease, which can be treated (not cured) - In onchocerciasis hyperendemic settings, > 85% of epilepsies are potentially caused by O. volvulus [5, 50, 52] and can therefore be prevented by adhering to CDTI. |
| Reduce epilepsy treatment gap | Access to uninterrupted supply of affordable AED |
- Decentralize treatment/care services for PWE - Decrease stigma by improving knowledge to stimulate positive health-seeking behavior |
| Reducing knowledge gap about treatment | Improve adherence to AED treatment |
- Message: AED treatment should not be interrupted - Discourage treatment using traditional medicine |
| Support for affected families | Improve their quality of life |
- Provide psycho-social support for PWE and their families - Organize income-generating activities |
| Training healthcare workers (HCW) | Improve quality of care for PWE | - Set up comprehensive programs to train local HCW for the treatment, care, follow-up and co-morbidity management of PWE [50] |
| Training of teachers | Decrease school drop-out rates | - Set up training programs for teachers on how to deal with children with epilepsy |
| Support for community-based associations of PWE | Advocacy to improve the quality of life of PWE and their families |
- Involve peer support groups - Use role models - Provide support for associations of PWE |
| Strengthening mental/brain health services and onchocerciasis elimination program |
Early diagnosis and initiation of AED treatment. Decrease O. volvulus transmission to prevent new cases of OAE |
- Increase collaboration between both programmes - Set up surveillance system for epilepsy - Monitor the quality of the services for PWE - Improve adherence with CDTI, stressing the importance of taking ivermectin to prevent OAE - Bi-annual CDTI in situations of high exposure to infected blackflies. |
| Strengthening the legal framework | Protect PWE against discrimination, abuse, rape | - Provide legal support for PWE |
| Cost of epilepsy studies | Evaluate the cost-effectiveness of interventions | - Conduct cost-effectiveness studies for epilepsy management in onchocerciasis-endemic areas with high epilepsy prevalence, prior to interventions |
| Fundraising | Increase funding for the treatment and prevention of epilepsy in onchocerciasis-endemic regions |
- Establish OAE advocacy strategy - Create awareness about OAE among pharmaceutical companies, NGOs, international funding agencies - Document OAE burden of disease - Dissemination of OAE research findings - Obtain support from WHO, MOH, ILAE |
AED Anti-epileptic drugs, PWE Person(s) with epilepsy, CDTI Community-directed treatment with ivermectin, OAE Onchocerciasis-associated epilepsy, NGOs Non-governmental organizations, WHO World Health Organizition, MOH Ministry of Health, ILAE International league against epilepsy