Skip to content

Epilepsy Care for Children Living in Disadvantaged Countries Around the World

The survey is in English and includes 42 single or multiple-choice questions designed to better understand the needs in each county by gathering demographic data of responders (full name, position, country, place of practice), average time to epilepsy diagnosis, availability of clinical assessment, barriers to accessing epilepsy diagnosis and care, socioeconomical conditions, general barriers related educational and social opportunities. Creating an effective survey for Work Package 1, which focuses on Needs Assessment and Site Selection, requires careful consideration of the cultural context, language barriers, and the specific goals of the project. The survey should aim to gather comprehensive information about the prevalence of pediatric epilepsy, existing healthcare infrastructure, and community perceptions.
Pediatric Epilepsy Care Needs Assessment

Dear colleague,
Thank you for participating in this important survey aimed at understanding the needs and challenges related to pediatric epilepsy care in your community. Your insights are crucial in shaping a project that will enhance epilepsy care for children in disadvantaged areas.
1. Responder(Required.)
2. Position(Required.)
3. Location(Required.)
4. Place of practice setting(Required.)
5. Place/s where you work (please circle all relevant place/s):(Required.)
6. Who provides most of the epilepsy care in your country?(Required.)
7. Did you have epilepsy training courses?(Required.)
8. Is there a need for more professional training in your country? If yes, please rate from 1 (low priority) to 5 (high priority) the current training needs:(Required.)
1
2
3
4
5
Primary health
Nursing
General paediatrician/physician
Specialist neurology
Advance training for rare disease and complex management
Diagnostic EEG/imaging staff
9. How would you rate the level of awareness about pediatric epilepsy in your community?(Required.)
10. Are there any specific misconceptions or stigmas related to pediatric epilepsy prevalent in your community? If yes, please describe.(Required.)
11. Are there campaigns or public education programs in your country to raise awareness about epilepsy and address stigma and harmful misconceptions? If yes, please describe.(Required.)
12. How accessible is healthcare in your country for children with epilepsy?(Required.)
13. What is the incidence of epilepsy in children (0-18 years) per 1000/year in your country?(Required.)
14. What re the most common presumed aetiologies of epilepsy in children? Please rank 1-5:(Required.)
1
2
3
4
5
intracranial infections of bacterial or viral origin
perinatal brain damage,
head injuries
toxic agents
genetic or hereditary factors
metabolic
structural
15. On scale of 1 (nothing in place) to 5 (excellent), how would you rate national or regional prevention programs.(Required.)
16. Do you think that your government has the interest/capacity to expand epilepsy services?(Required.)
17. How many children do you see per year?(Required.)
18. How many children do you make a new diagnoses of epilepsy per year?(Required.)
19. Average time to diagnosis since onset of symptoms (where?- personal practive vs region/country)(Required.)
20. What are the two main barriers that prevent epilepsy patients from having a timely diagnosis in your opinion?(Required.)
21. Who pays for patients’ clinical assessment?(Required.)
22. How available is EEG in your region/country?(Required.)
23. Is MRI available in the province where you work?(Required.)
23 A. In case you have access to MRI, can you specify the MRI magnet?(Required.)
23B If not do you have access too CT scan(Required.)
23 C. Who reports(Required.)
23 D. Is there a fee for neuroimaging?(Required.)
24. Do you have access to genetic testing?(Required.)
24 A. In case you have access to genetic testing, who is paying?(Required.)
24B. Is there access to genetic counselling?(Required.)
25. What proportion of people with epilepsy in your country do you estimate receive appropriate treatment?(Required.)
26. What are the two main barriers that prevent epilepsy patients from having a proper treatment in your opinion?(Required.)
27. Are medications you prescribe/medications of your patients readily available in the city where you work?(Required.)
28. How are medications payed for?(Required.)
29. What proportion of patients can afford this?(Required.)
30. Which antiseizure medicines are available in your country and are part of your government essential medicine list?(Required.)
31. Is epilepsy surgery a practical option for your patients who may need it?(Required.)
32. How many of your patients underwent epilepsy surgery per year (consider last 3 years)?(Required.)
33. What percentage of your epilepsy patients is seizure free for the previous year or longer?(Required.)
33 A. How this is estimated? (registries, personal experience, pubblications)(Required.)
34. How many epilepsy-related deaths (drowning, accidents, aspiration pneumonia, status epilepticus, SUDEP) have been reported between your patients during the previous year?(Required.)
34 A. Is there a notification system attached to this?(Required.)
35. What percentage of your epilepsy patients of school age attends school?(Required.)
36. What is the main barrier that prevent epilepsy patients from attending school in your opinion?(Required.)
37. What is the main barrier that prevent society to accept epilepsy patients in your opinion?(Required.)
38. Are rehabilitation programs for epilepsy comorbidities available in the province where you work?(Required.)
39. Who pays for rehabilitation program?(Required.)
40. Who can give financial support to epilepsy patients’ families?(Required.)
41. Are epilepsy patients group available in the area where you work?(Required.)
42. Are epilepsy training courses for caregivers available in the area where you work?(Required.)