Demonstration project on epilepsy in Brazil - WHO/ILAE/IBE global campaign against epilepsy: a foreword

Projeto demonstrativo em epilepsia no Brasil - campanha global contra epilepsia da WHO/ILAE/IBE: preâmbulo

Demonstration project on epilepsy in Brazil – WHO/ILAE/IBE global campaign against epilepsy: a foreword

Projeto demonstrativo em epilepsia no Brasil – campanha global contra epilepsia da WHO/ILAE/IBE: preâmbulo

Li M. Li, MD PhD^{I, II}; Paula T. Fernandes, MSc PhD^{I, II}; PhD; Hanneke M. de Boer^{III, IV}; Leonid Prilipko, MD^{III, V}; Josemir W. Sander, MD PhD FRCP^{IV, VI}

^IDepartment of Neurology, Faculty of Medicine, UNICAMP, Campinas, SP, Brazil

^IIAssistência à Saúde de Pacientes com Epilepsia – ASPE, Campinas, SP, Brazil

^IIIGlobal Campaign Against Epilepsy Secretariat, Geneva, Switzerland

^IVEpilepsy Institute of the Netherlands, SEIN, Heemstede, Achterweg 5, 2103 SW Heemstede, the Netherlands

^VDepartment of Mental Health and Substance Abuse World Health Organization, Geneva, Switzerland

^VIDepartment of Clinical and Experimental Epilepsy, UCL Institute of Neurology, London UK

In 2002, ASPE (Assistência à Saúde de Pacientes com Epilepsia)^* initiated an Epilepsy Demonstration Project (DP) in Brazil as part of the Global Campaign Against Epilepsy "Epilepsy out of the Shadows", led by the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE)^1-4. Demonstration Projects have been carried out in several countries and their main aim is to develop treatment models for people with epilepsy in primary health care settings, improving the quality of life of people with epilepsy and their families^5-9.

The project in Brazil has targeted areas in Campinas and São José do Rio Preto municipalities, both in São Paulo State, in Southeastern region⁸. A task force has been established to assess strategies to expand this nationwide. The DP was carried out in six phases as shown in Figure 1.

The Brazilian DP was officially closed during the IV Workshop of the WHO/ILAE/IBE Global Campaign Against Epilepsy "Epilepsy out of the Shadows", held on May 4-5^th 2006, in Campinas. The workshop reviewed the results of the project and discussed the establishment of a National Epilepsy Policy. This supplement presents some results from all phases of the Brazilian DP which were discussed during the Workshop. In brief, we believe that the DP had an impact in our society and brought a new perspective on epilepsy. Awareness campaigns are now carried out on September 9^th (Epilepsy Awareness Day) annually in many sites around the country. Regulations and Bills related to epilepsy have been proposed in several regions. Epilepsy has been officially adopted as a theme to be considered in elementary education by the Ministry of Education. Currently, a National Epilepsy Programme, endorsed by the main Brazilian non-governmental organizations in the field of epilepsy, is under review at the Ministry of Health. We hope that this will benefit some of the many people with epilepsy in the country and will eventually bring epilepsy out of the shadows in Brazil.

The Editors

PHASE 1 – EPIDEMIOLOGICAL SURVEY

The prevalence of epilepsy in Brazil is similar to that in other resource-poor countries, and the treatment gap is high^10,11. Epilepsy is more prevalent amongst less wealthy people, and elderly people (over 59 years old) are more likely to be affected by active epilepsy¹¹. Nevertheless the treatment gap is similar amongst the different social classes. Commitment of the Brazilian health system towards improvement of the quality of health management for people with epilepsy and consistent and regular AED supply is urgently needed¹² (article 1: Demonstration project on epilepsy in Brazil: situation assessment¹³).

PHASE 2 – TRAINING COURSES

The training courses were divided into three modules, for health professionals; trainers (article 2: Training the trainers and disseminating information: a strategy to educate health professionals on epilepsy¹⁴ - and article 3: Training medical students to improve the management of people with epilepsy¹⁵) and teachers (article 4: Teachers perception about epilepsy¹⁶). The health professional training courses promote confidence in dealing with patients with epilepsy, better knowledge about the condition, fewer wrong beliefs and myths about epilepsy, more knowledge about dealing with AEDs and less referral to neurologists. The training the trainers course promotes low cost and highly effective actions in the management of epilepsy and can quickly expand the training program nationwide. Children may have negative perceptions about epilepsy¹⁷. For this reason, it is important to develop continuous efforts in elementary schools to change the negative perceptions about epilepsy in our society. In this context, the teacher’s educational courses were performed and the results showed that they were effective and had a long term effect on the knowledge, attitude and perception of teachers in elementary schools.

PHASE 3 – STIGMA IDENTIFICATION

To performed this phase, we completed the conceptualization of stigma¹⁸ and the elaboration of the instrument^19,20. The article presented here (article 5: Stigma scale of epilepsy: validation process²¹) refers to the validation process of the Stigma Scale of Epilepsy, the first instrument to measure this perception in a poor-resource country. The final results of this research performed with 1,850 people in the community showed that the negative social attitudes and feelings observed in certain segments of the community can create inappropriate behavior, difficulties in social relationships, work and school and consequently perpetuate stigma in society²². The magnitude of stigma is different within different segments of local society (gender, social class, school level and religion) and for this reason, mass media campaigns should target these social segments in order to fight prejudice and improve the social acceptance of people with epilepsy²³. Also, we identify the epilepsy perception of university students (article 6: Epilepsy perception amongst university students: a survey²⁴), which is often negative.

PHASE 4 – MASS MEDIA

We observed that the attitude (article 7: Stigma and attitudes on epilepsy: a study with secondary school students²⁵) and language expression²⁶ seems to have consequence in the stigma perception about epilepsy. In this context, we should consider the proper usage of language as it matters for bringing epilepsy out of the shadows. Furthermore, effective mass media campaigns²⁷ should consider specific language of the different segments of the society to take out labels and improve social acceptance and reduce epilepsy stigma²⁸.

NATIONAL PHASE

The modules created and developed in this DP (training, de-stigmatization, social network) can be implanted easily and tailored to the requirements of each region of the country^29-31. This has been tested in several cities in the country (article 2: Training the trainers and disseminating information: a strategy to educate health professionals on epilepsy¹⁴). Furthermore, the DP has been instrumental in sensitizing society^32,33 and bringing together related organizations for an awareness campaign carried out all over Brazil during the National Week of Epilepsy^34,35 (article 8: National epilepsy movement in Brazil³⁶).

PHASE 5-6 - DATA ANALYSIS

The developed model of epilepsy treatment for primary health level based on the existing health system with strategic actions centered on the health care providers and the community has been shown to be effective and efficient. We demonstrated that, using our model, people with epilepsy can be effectively treated at the primary health level, with important reductions in seizure frequency, as well as improvements in general well being. This model can be applied nationwide, as the key elements exist provided that the strategic measures are put forward in accordance with local health providers and managers (article 9: Demonstration Project on Epilepsy in Brazil: outcome assessment³⁷).

REFERENCES

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2. Reynolds EH. The ILAE/IBE/WHO Global campaign against epilepsy: bringing epilepsy "Out of the shadows". Epilepsy Behav 2000;1: S3-S8.

3. Saraceno B. Global campaign against epilepsy: closing remarks. Epilepsia 2002;43(Suppl 6):20.

4. Sander JW. Global campaign against epilepsy: overview of the demonstration projects. Epilepsia 2002;43(Suppl 6):34-36.

5. Wang WZ, Wu JZ, Wang DS, et al. The prevalence and treatment gap in epilepsy in China: an ILAE/IBE/WHO study. Neurology 2003;60: 1544-1545.

6. Wang WZ, Wu JZ, Ma GY, et al. Efficacy assessment of phenobarbital in epilepsy: a large community-based intervention trial in rural China. Lancet Neurol 2006;5:46-52.

7. Diop AG, de Boer HM, Mandlhate C, Prilipko L, Meinardi H. The global campaign against epilepsy in Africa. Acta Trop 2003;87:149-159.

8. Li LM, Sander JW. National demonstration project on epilepsy in Brazil. Arq Neuropsiquiatr 2003;61:153-156.

9. Ndoye NF, Sow AD, Diop AG, et al. Prevalence of epilepsy its treatment gap and knowledge, attitude and practice of its population in sub-urban Senegal an ILAE/IBE/WHO study. Seizure 2005;14:106-111.

10. Noronha AL, Marques LH, Borges MA, Cendes F, Guerreiro CA, Min LL. Assessment of the epilepsy treatment gap in two cities of south-east of Brazil. Arq Neuropsiquiatr 2004;62:761-763.

11. Noronha ALA, Borges A, Marques LH, et al. Prevalence and pattern of epilepsy treatment in different social-economic classes in Brazil. Epilepsia 2007;**(*):1-6, 2007, doi:10.1111/j.1528-1167.2006.00974.

12. Li LM, Fernandes PT, Mory S, et al. Managing epilepsy in the primary care network in Brazil: are health professionals prepared?. Rev Panam Salud Publica 2005;18:296-302.

13. Li LM, Fernandes PT, Noronha AL, et al. Demonstration project on epilepsy in Brazil: situation assessment. Arq Neuropsiquiatr 2007; 65(Supl 1):5-13.

14. Fernandes PT, Noronha AL, Sander JW, Bell GS, Li LM. Training the trainers and disseminating information: a strategy to educate health professionals on epilepsy. Arq Neuropsiquiatr 2007;65(Supl 1):14-22.

15. Noronha AL, Fernandes PT, Andrade MGG, Santiago SM, Sander JW, Li LM. Training medical students to improve the management of people with epilepsy. Arq Neuropsiquiatr 2007;65(Supl 1):23-27.

16. Fernandes PT, Noronha AL, Araújo U, et al. Teachers perception about epilepsy. Arq Neuropsiquiatr 2007;65(Supl 1):28-34.

17. Fernandes PT, Cabral P, Araújo UF, Noronha ALA, Li LM. Kids' perception about epilepsy. Epilepsy Behav 2005;6:601-603.

18. Fernandes PT, Salgado PC, Noronha ALA, Barbosa FD, Souza EA, Li LM. Stigma scale of epilepsy: conceptual issues. J Epilepsy Clin Neurophysiol 2004;10:213-218.

19. Fernandes PT, Salgado PC, Noronha ALA, et al. Prejudice towards chronic diseases: comparison among AIDS, diabetes and epilepsy. Seizure 2007;in press doi: 10.1016/j.seizure.2007.01.008.

20. Salgado PC, Fernandes PT, Noronha AL, Barbosa FD, Souza EA, Li LM. The second step in the construction of a stigma scale of epilepsy. Arq Neuropsiquiatr 2005;63:395-398.

21. Fernandes PT, Salgado PC, Noronha AL, Sander JW, Li LM. Stigma scale of epilepsy: validation process. Arq Neuropsiquiatr 2007;65(Supl 1):35-42.

22. Fernandes PT, Salgado PC, Noronha ALA, et al. Epilepsy stigma perception in an urban area of a limited resource country. Epilepsy Behav 2007;in press.

23. Fernandes PT, Li LM. Estigma na epilepsia. 1-207. 2005. Departamento de Neurologia - FCM/UNICAMP. PhD Thesis.

24. Caixeta J, Fernandes PT, Li LM. Epilepsy perception amongst university students: a survey. Arq Neuropsiquiatr 2007;65(Supl 1):43-48.

25. Reno BA, Fernandes PT, Bell GS, Sander JW, Li LM. Stigma and attitudes on epilepsy: a study with secondary school students. Arq Neuropsiquiatr 2007;65(Supl 1):49-54.

26. Fernandes PT, Li LM. Epileptic x person with epilepsy: does it matter? IV Congresso Latinoamericano de Epilepsia, Guatemala - Libro de resumes/Abstract Book , 36. 2006.

27. Fernandes PT, Salgado PC, Noronha AL, Mory SB, Rio PA, Li LM. Combate ao estigma na epilepsia pela conscientização através da mídia. J Epilepsy Clin Neurophysiol 2004;10:167-170.

28. Fernandes PT, Li LM. Percepção de estigma na epilepsia. J Epilepsy Clin Neurophysiol 2006;12:207-218.

29. Fernandes PT, Noronha AL, Cendes F, Silvado C, Guerreiro CA, Li LM. Relatório do I Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia. J Epilepsy Clin Neurophysiol 2003;9:93-96.

30. Fernandes PT, Leitão LM, Souza RJ, Li LM. Relatório do II Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia. J Epilepsy Clin Neurophysiol 2004;10:117-120.

31. Fernandes PT, Souza RJ, Li LM. Relatório do III Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia. J Epilepsy Clin Neurophysiol 2005;11:97-99.

32. Fernandes PT, Salgado PC, Noronha AL, Mory SB, Li LM. A experiência ASPE no trabalho com grupos na epilepsia. Cadernos de Serviço Social 2004;25:41-48.

33. Fernandes PT, Salgado PC, Noronha AL, Mory SB, Li LM. Formação de grupos como suporte psicológico e social na epilepsia. J Epilepsy Clin Neurophysiol 2004;10:171-174.

34. Fernandes PT, Souza RJ, Li LM. Relatório da II Semana Nacional de Epilepsia. J Epilepsy Clin Neurophysiol 2004;10:245-247.

35. Fernandes PT, Souza RJ, Li LM. Relatório da III Semana Nacional de Epilepsia. J Epilepsy Clin Neurophysiol 2005;11:205-207.

36. Fernandes PT, Noronha AL, Sander JW, Li LM. National epilepsy movement in Brazil. Arq Neuropsiquiatr 2007;65(Supl 1):55-57.

37. Li LM, Fernandes PT, Noronha ALA, et al. Demonstration project on epilepsy in Brazil: outcome assessment. Arq Neuropsiquiatr 2007; 65(Supl 1):58-62.

*

ASPE is a non-governmental organization founded in 2002. The ASPE mission is to promote bio-psycho-social health and to improve the quality of life of people with epilepsy and their families. The ASPE vision is to create centres of excellence and models of epilepsy in education, science and arts, guaranteeing integral and high quality assistance to people with epilepsy and their families.

Publication Dates

• Publication in this collection
  29 Nov 2007
• Date of issue
  June 2007