1 Cadernos Saúde Coletiva Vol: 21(4):. DOI: 10.1590/S1414-462X2013000400014

Leprosy reactions after release from multidrug therapy in an endemic cluster in Brazil: patient awareness of symptoms and self-perceived changes in life

We assessed diagnosis and consequences of leprosy reactions as perceived by affected individuals. A cross-sectional study was performed in five municipalities in an endemic disease cluster in Brazil. Structured interviews included 280 leprosy-affected individuals who had experienced reactions after release from treatment (RFT), 2007-2009. Open questions included information on diagnostic features of leprosy reactions, sensory loss and self-perceived changes in life after experiencing leprosy reactions. In this study, 43.2% were diagnosed with reaction during multi-drug therapy. In the majority of cases, the patient himself/herself perceived disease symptoms first (n=240; 85.8%). Primary Health Care Centres were the first entry point into the health system for 95/150 (63.3%). In 72.6% of these, leprosy diagnosis was made within the primary care setting. Patientperceived signs and symptoms of reactions included skin lesions (42%) and neurological symptoms (39%). In total, 216/280 (77.1%) stated that they had perceived changes in life. Physical impairments limiting possibilities to work and reduced income were mentioned commonly (n=118; 54.6%). Discrimination and social isolation were also experienced. Our study indicates an inadequate response of health services for individuals with reactions after RFT. An integrated approach is needed, including physical, psychological care and self-care groups.

Mentions
Figures
Figure 1
Altmetric
References
  1. World Health Organization. Global leprosy situation Wkly Epidemiol Rec. 2013. [cited 2013 Nov 10]. Available from: Link 88, 365-80 (2012) .
  2. Brasil. Ministério da Saúde. Coordenação geral de hanseníase e doenças em eliminação. Distribuição da hanseniase no Brasil [Internet]. [Cited 2013 Nov 10]. Available from: Link , (2012) .
  3. Schreuder PA. The occurrence of reactions and impairments in leprosy: experience in the leprosy control program of three provinces in northeastern Thailand, 1987-[correction of ]. II. Reactions. Int J Lepr Other Mycobact Dis. 1998159-69 66, 1978-1995 (1995) .
  4. Schreuder PA. The occurrence of reactions and impairments in leprosy: experience in the leprosy control program of three provinces in northeastern Thailand, 1987-[correction of ]. III. Neural and other impairments. Int J Lepr Other Mycobact Dis.1998170-181 66, 1978-1995 (1995) .
  5. Croft RP, Nicholls PG, Steyerberg EW, Richardus JH, Cairns W, Smith S. A clinical prediction rule for nerve-function impairment in leprosy patients. Lancet.355 , 1603-6 (2000) .
  6. Mendes MS, Trindade LC, Cantídio MM, Aquino JAP, Campos GP, Zamora A, et al. Descentralização das ações de controle da hanseníase em João Pessoa (Paraíba): a visão dos gestores. Cad Saúde Colet.16(2) , 217-30 (2008) .
  7. Correia CMF, Pimentel NSN, Fialho VML, Oliveira RML, Gomide M, Heukelbach J. Fatores associados à alta demanda de pacientes com hanseníase em centro de referência em Manaus, Amazonas. Cad Saúde colet.16(2) , 169-80 (2008) .
  8. Ferreira MLLT, Pontes MAA, Silveira MIS, Araújo LF, Kerr LRS. A demanda de um centro de referência nacional para hanseniase no nordeste brasileiro: por que o excesso de pacientes? Cad Saúde Colet.16(2) , 243-56 (2008) .
  9. Meima A, Saunderson PR, Gebre S, Desta K, Habbema JD. Dynamics of impairment during and after treatment: the AMFES cohort. Lepr Rev.72 , 158-70 (2001) .
  10. Van Brakel WH, Nicholls PG, Das L, Barkataki P, Suneetha SK, Jadhav RS, et al. The INFIR Cohort Study: investigating prediction, detection and pathogenesis of neuropathy and reactions in leprosy. Methods and baseline results of a cohort of multibacillary leprosy patients in north India. Lepr Rev.76 , 14-34 (2005) .
  11. Barbosa JC, Ramos Jr AN, Alencar MJF, Castro CGJ. Pós-alta em Hanseníase no Ceará: limitação da atividade funcional, consciência de risco e participação social. Rev Bras Enferm.61 , 727-33 (2008) .
  12. Barbosa JC. Pós-alta em hanseníase no Ceará: olhares sobre políticas, rede de atenção à saúde, limitação funcional, de atividades e participação social das pessoas atingidas [tese].São Paulo (SP): Universidade de São Paulo , (2009) .
  13. Richardus JH, Nicholls PG, Croft RP, Withington SG, Smith WC. Incidence of acute nerve function impairment and reactions in leprosy: a prospective cohort analysis after 5 years of follow-up. Int J Epidemiol.33 , 337-43 (2004) .
  14. Wagenaar I, Brandsma W, Post E, van Brakel W, Lockwood D, Nicholls P, et al. Two randomized controlled clinical trials to study the effectiveness of prednisolone treatment in preventing and restoring clinical nerve function loss in leprosy: the TENLEP study protocols. BMC Neurol.12:159 , (2012) .
  15. Brasil. Relatório Executivo do PNCH Ministério da Saúde. Período Maio dea Junho de 2008. Brasília: Secretaria de Vigilância em Saúde. Programa Nacional de Controle da Hanseníase. Mimeo; 2008 , (2007) .
  16. Penna ML, de Oliveira ML, Penna GO. The epidemiological behavior of leprosy in Brazil. Lepr Rev.80(3) , 332-44 (2009) .
  17. Alencar CH, Ramos Jr AN, Santos ES, Richter J, Heukelbach J. Clusters of leprosy transmission and of late diagnosis in a highly endemic area in Brazil: focus on different spatial analysis approaches. Trop Med Int Health.17(4) , 518-25 (2012) .
  18. Brasil. Portaria nº 157, de 19 de Fevereiro de Ministério da Saúde -Gabinete do Ministro [cited 2012]. Available from: Link , (1998) .
  19. Saunderson P, Gebre S, Desta K, Byass P, Lockwood DN. The pattern of leprosy-related neuropathy in the AMFES patients in Ethiopia: definitions, incidence, risk factors and outcome. Lepr Rev.71 , 285-308 (2000) .
  20. Pfaltzgraff REP, Bryceson A. Clinical leprosy. In: Hastings RC, editor. Leprosy. Edinburgh: Churchill Livingstone; p , 134-176 (1985) .
  21. Kelly-Santos A, Monteiro S, Rozemberg B. Significados e usos de materiais educativos sobre hanseníase segundo profissionais. Cad Saúde Pública.25 , 857-67 (2009) .
  22. Smith WCS, Nicholls PG, Das L, Barkataki P, Suneetha S, Suneetha L, et al. Predicting neuropathy and reactions in leprosy at diagnosis and before incident events-results from the INFIR Cohort Study. PLoS Negl Trop Dis.3:e500 , (2009) .
  23. Lasry-Levy E, Hietaharju A, Pai V, Ganapati R, Rice ASC, Haanpää M, et al. Neuropathic pain and psychological morbidity in patients with treated leprosy: a cross-sectional prevalence study in Mumbai. PLoS Negl Trop Dis.5:e981 , (2011) .
  24. Rodrigues ALP, Almeida AP, Rodrigues BF, Pinheiro CA, Borges DS, Mendonça MLH, et al. Ocorrência de reações em pacientes pós-alta por cura de hanseníase: subsídios para implementação de um programa de atenção específica. Hansen Int.25 , 7-16 (2000) .
  25. Oliveira CR, Alencar MJF, Santana SC, Neto SAS, Júnior ANR. Fatores que influenciaram a inadequação do diagnóstico e do acompanhamento dos estados reacionais em hanseníase no Estado de Rondônia, Brasil. Hansen Int.32(2) , 185-96 (2007) .
  26. Battistella LR, de Brito CMM. Classificação Internacional de Funcionalidade (CIF). International Classification of Functioning Disability and Health (ICF). Acta Fisiátr.8 , 18-23 (2001) .
  27. Farias N, Buchalla CM. A classificação internacional de funcionalidade, incapacidade e saúde da Organização Mundial da Saúde: conceitos, usos e perspectivas. Rev Bras Epidemiol.8 , 187-93 (2005) .
  28. Amorim DGO, Waltrick CR, Wendhausen A. Participação: possibilidade na busca da cidadania para o portador de hanseniase? Texto & contexto enferm.7 , 328-44 (1998) .
  29. Van Brakel WH, Anderson AM, Worpel FC, Saiju R, Bk HB, Sherpa S, et al. A scale to assess activities of daily living in persons affected by leprosy. Lepr Rev.70 , 314-23 (1999) .
  30. Eidt LM. Ser hanseniano: sentimentos e vivências. Hansen Int.29 , 21-7 (2004) .
  31. Anandaraj H. Measurement of dehabilitation in patients of leprosy--a scale. Indian J Lepr.67 , 153-60 (1995) .
  32. Cross H, Choudharystep R. An intervention to address the issue of stigma related to leprosy in Southern Nepal. Lepr Rev.76 , 316-24 (2005) .
Expand