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Journal of Immigrant and Minority Health

, Volume 19, Issue 1, pp 80–90 | Cite as

The Catalonian Expert Patient Programme for Chagas Disease: An Approach to Comprehensive Care Involving Affected Individuals

  • Isabel Claveria Guiu
  • Johanna Caro Mendivelso
  • Hakima Ouaarab Essadek
  • Maria Asunción González Mestre
  • Pedro Albajar-Viñas
  • Jordi Gómez i Prat
Original Paper

Abstract

The Catalonian Expert Patient Programme on Chagas disease is a initiative, which is part of the Chronic Disease Programme. It aims to boost responsibility of patients for their own health and to promote self-care. The programme is based on nine sessions conducted by an expert patient. Evaluation was focusing in: habits and lifestyle/self-care, knowledge of disease, perception of health, self-esteem, participant satisfaction, and compliance with medical follow-up visits. Eighteen participants initiated the programme and 15 completed it. The participants were Bolivians. The 66.7 % of them had been diagnosed with chagas disease in Spain. The 100 % mentioned that they would participate in this activity again and would recommend it to family and friends. The knowledge about disease improve after sessions. The method used in the programme could serve as a key strategy in the field of comprehensive care for individuals with this disease.

Keywords

Expert patient Chagas disease Comprehensive care Chronic disease 

Notes

Acknowledgments

We would like to thank the Catalonian Institute of Health for entrusting us with the challenge of implementing the first Catalonian Expert Patient Programme® on a neglected tropical disease like Chagas disease. We would also like to thank the World Health Organization Department of control of Neglected Tropical Diseases for supporting our initiative, and all the individuals affected by the disease for sharing and exchanging their knowledge with us. Estefa Choque collaborated in the adaptations of the language of the guidelines, support of the expert patient and observation in the groups.

References

  1. 1.
    World Health Organization (WHO). World Health Statistics 2012. Geneva: WHO. Available from: http://www.who.int/gho/publications/world_health_statistics/EN_WHS2012_Full.pdf.
  2. 2.
    World Health Organization. Working to overcome the global impact of neglected tropical diseases: first WHO report on neglected tropical diseases. Geneva: WHO/HTM/NTD/2010.1; 2010.Google Scholar
  3. 3.
    World Health Organization. Working to overcome the global impact of neglected tropical diseases: first WHO report on neglected tropical diseases. Geneva: WHO/HTM/NTD/2010.1; 2010.Google Scholar
  4. 4.
    World Health Organization. Key interventions: situation report. In: WHO (editor). Sustaining the drive to overcome the global impact of neglected tropical diseases. Second WHO report on neglected tropical diseases. Geneva: World Health Organization; 2013.Google Scholar
  5. 5.
    González A. Programa Pacient Expert Catalunya®. De pacient passiu a pacient actiu: complint expectatives (From passive patient to active patient: meeting expectations) RevistaeSalud.com. 8(31); 2012. ISSN:1698-7969.Google Scholar
  6. 6.
    Pla de Salut de Catalunya 20112015 (Catalonian Health Plan 2011–2015). Department of Health. Government of Catalonia.Google Scholar
  7. 7.
    Ware J Jr, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34:220–33.CrossRefPubMedGoogle Scholar
  8. 8.
    Rosenberg M. Society and the adolescent self-image. Revised edition. Middletown: Wesleyan University Press; 1989.Google Scholar
  9. 9.
    Ventura-Garcia L, Roura M, Pell C, Posada E, Gascón J, Aldasoro E, Muñoz J, Pool R. Socio-cultural aspects of chagas disease: a systematic review of qualitative research. PLoS Negl Trop Dis. 2013;7(9):e2410.CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    González Mestre A. Programa Pacient Expert Catalunya ® : una estratègia per potenciar l’autorresponsabilitat del pacient i el foment de l’autocura. Generalitat de Catalunya. Programa de prevenció i atenció a la cronicitat (Catalonian Expert Patient Programme: a strategy for promoting patient self-responsibility and self-care) [online edition] 2013. Accessible at: http://www20.gencat.cat/docs/salut/Home/Ambits%20tematics/Linies%20dactuacio/Model_assistencial/Atencio_al_malalt_cronic/documents/arxius/programa_pacient_expert_Catalunya.pdf.
  11. 11.
    Gascon J, Bern C, Pinazo M. Chagas disease in Spain, the United States and other non-endemic countries. Acta Trop. 2010;115(1–2):22–7.CrossRefPubMedGoogle Scholar
  12. 12.
    Magnani C, Guimaraes B, Dias E. Representações, mitos e comportamentos do paciente submetido implante ao implante de marcapasso na doença de Chagas (Representations, myths and behaviours concerning Chagas disease patients undergoing a pacemaker implantation procedure). Cad Saúde Pública. 2007;23(7):1632.CrossRefGoogle Scholar
  13. 13.
    Uchoa E, Firmo J, Dias E, et al. Signos, significados e ações associados à doença de Chagas (Signs, signifiers and actions associated with Chagas disease). Cad Saúde Pública, Rio de Janeiro. 2002;18(1):71–9.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Isabel Claveria Guiu
    • 1
  • Johanna Caro Mendivelso
    • 2
  • Hakima Ouaarab Essadek
    • 1
  • Maria Asunción González Mestre
    • 3
    • 5
  • Pedro Albajar-Viñas
    • 4
    • 6
  • Jordi Gómez i Prat
    • 1
  1. 1.Drassanes-Vall d’Hebron International Health UnitInternational Health Programme of the Catalonian Institute of Health (PROSICS)BarcelonaSpain
  2. 2.Preventative Medicine Service, Vall d’Hebron Hospital (2014)IDIAP Jordi GolBarcelonaSpain
  3. 3.Chronic Disease Prevention and Care Programme, Department of HealthGovernment of CataloniaBarcelonaSpain
  4. 4.Chagas Disease Control Programme, Control of Neglected Tropical Diseases DepartmentWorld Health OrganizationGenevaSwitzerland
  5. 5.Cap de Programa Pacient Expert Catalunya, Programa de prevenció i atenció a la cronicitat, Direcció General de Planificació i Recerca en SalutDepartament de SalutBarcelonaSpain
  6. 6.WHO/HTM/NTD/IDM/Chagas disease, World Health Organization/Organisation mondiale de la Santé, HIV/AIDS, Tuberculosis, Malaria and Neglected Diseases, Control of Neglected Tropical DiseasesInnovative and Intensified Disease ManagementGenève 27Switzerland

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