Health care for people with sickle cell disease in a medium-sized Brazilian city

Mário Cézar de Oliveira, Rosana Paula Pires, Lúcio Borges Araújo, João Carlos de Oliveira, Tânia Machado Alcântara

Abstract


The objective of the study was to evaluate the access, assistance and satisfaction of people with sickle cell disease in relation to the health care provided by the Unified Health System in the Uberlândia city, Minas Gerais, Brazil. Thirty-four people with sickle cell disease were recruited using the snowball sampling method and submitted to semi-structured interview, with collection of demographic, clinical and relationship data and satisfaction with health care. Forty-four percent were not included in the Primary Health Care network, which did not provide several procedures/actions recommended by the Ministry of Health. Ninety-four percent were unsatisfied/partially satisfied with the emergency care provided in the Integrated Care Units. The main reasons for this unsatisfied were ignorance of sickle cell disease by the health team (87.5%), delay in care (81.3%) and inadequate conduct by the health team (59.5%). In conclusion, the access and quality of care provided to people with sickle cell disease by the Primary Health Care network and the Urgency and Emergency Network need to be improved and this improvement is directly related to the training of health teams.


Keywords


Sickle Cell Disease; Primary Health Care; Evaluation of Health Care

Full Text:

PDF

References


Pires RP, Rocha AF. Assistência de Enfermagem a Trabalhadores Portadores de Doença Falciforme. Rev Bras Hematol Hemoter 2009; 31:36-46.

Lobo C. Doença falciforme - um grave problema de saúde pública mundial. Rev Bras Hematol Hemoter 2010; 32:280-1.

Pule GD, Mnika K, Joubert M, Mowla S, Novitzky N, Wonkam A. Burden, genotype and phenotype profiles of adult patients with sickle cell disease in Cape Town, South Africa. SAMJ 2017; 107:149-55.

Cançado RD, Jesus JA. A doença falciforme no Brasil. Rev Bras Hematol Hemoter 2007; 29:203-6.

Martins PRJ, Moraes-Souza H, Silveira TB. Morbimortalidade em doença falciforme. Rev Bras Hematol Hemoter 2010; 32:378-83.

Naoum PC, Bnoninii-Domingos CR. Doença falciforme no Brasil. Origem, genótipos, haplótipos e distribuição geográfica. J Bras Patol Med Lab 1997; 33:145-53.

Saraf SL, Molokie RE, Nouraie M, Sable CA, Luchtman-Jones L, Ensing GJ, et al. Differences in the clinical and genotypic presentation of sickle cell disease around the world. Paediatr Respir Rev 2014; 15:4-12.

Habara A, Steinberg MH. Genetic basis of heterogeneity and severity in sickle cell disease. Exp Biol Med 2016; 241:689-96.

Manwani D, Frenette PS. Vaso-occlusion in sickle cell disease: pathophysiology and novel targeted therapies. Blood 2013; 122: 3892-8.

Sundd P, Gladwin MT, Novelli EM. Pathophysiology of Sickle Cell Disease. Annu Rev Pathol 2019; 14: 263-92.

Kikuchi BA. Assistência de enfermagem na doença falciforme nos serviços de atenção básica. Rev Bras Hematol Hemoter 2007; 29:331-8.

Lervolino LG, Baldin PEA, Picado SM, Calil KB, Viel AA, Campos LAF. Prevalence of sickle cell disease and sickle cell trait in national neonatal screening studies. Rev Bras Hematol Hemoter 2010; 33:49-54.

Evensen CT, Treadwell MJ, Keller S, Levine R, Hassell KL, Werner EM, et al. Quality of Care in Sickle Cell Disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care. Medicine 2016; 95:1-7.

Maitra P, Caughey M, Robinson L, Desai PC, Jones S, Nouraie M, et al. Risk factors for mortality in adult patients with sickle cell disease: a meta-analysis of studies in North America and Europe. Haematologica 2017; 102:626-36.

Zago MA, Pinto ACS. Fisiopatologia das doenças falciformes: da mutação genética à insuficiência de múltiplos órgãos. Rev Bras Hematol Hemoter 2007; 29:207-14.

Brunetta DM, Clé DV, Haes TM, Roriz-Filho JS, Moriguti JC. Manejo das complicações agudas da doença falciforme. Medicina (Ribeirão Preto) 2010; 43:231-7.

Strouse J. Sickle cell disease. Handb Clin Neurol 2016; 38:311-24.

Brasil. 2005. Ministério da Saúde. Portaria GM/MS no 1.391. Diário Oficial da União, Poder Executivo, Brasília, DF. 159, 1: 40.

Brasil. 2009. Ministério da Saúde. Portaria MS/GM no 2.084. Diário Oficial da União, Poder Executivo, Brasília, DF. 1: 61.

Brasil. 2010. Ministério da Saúde. Portaria SAS n 55. Diário Oficial da União, Poder Executivo, Brasília, DF. 1: 69-71.

Brasil. 2012. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de Atenção Especializada. Doença falciforme: condutas básicas para tratamento. Brasília. 64.

Brasil. 2015. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de Atenção Hospitalar e de Urgência. Doença falciforme: diretrizes básicas da linha de cuidado. Brasília. 82.

IBGE. 2019. Population statistics reports for the Uberlândia MG. https://www.ibge.gov.br/cidades-e-estados/mg/uberlandia.html/ (accessed 10december 2019).

CNES. 2019. Public health network for the Uberlândia MG. http://cnes.datasus.gov.br/pages/estabelecimentos/consulta.jsp?search=UBS%20DE%20UBERLANDIA%20MG/ (accessed 10 december 2019).

Berg S. Snowball Sampling. In: Kotz S., Johnson N.L. Encyclopedia of Statistical Sciences 1988; 8:528-32.

Fonseca JS, Martins GA. Curso de Estatística. 6ª ed, Ed. Atlas, 2006; 320p.

Januário JN. Incidência da doença falciforme em um milhão de nascidos vivos em Minas Gerais (1998-2001). Belo Horizonte (MG): Universidade Federal de Minas Gerais 2002: 97p.

Fernandes APPC, Avendanha FA, Viana MB. Hospitalizations of children with sickle cell disease in the Brazilian Unified Health System in the state of Minas Gerais. J Pediatr (Rio J) 2017; 93:287-93.

Felix AA, Souza HM, Ribeiro SBF. Aspecto clínico – Epidemiológico e percepção de dor na doença falciforme. Rev Bras Hematol Hemoter 2010; 32:203-8.

Cunha JHS, Monteiro CF, Ferreira LA, Cordeiro JR, Souza LMP. Papeis ocupacionais de indivíduos com anemia falciforme. Rev Ter Ocup Univ São Paulo 2017; 28:230-8.

Paiva e Silva RB, Ramalho AS, Cassorla RMS. A anemia falciforme como problema de Saúde Pública no Brasil. Rev Saúde Pública 1993; 27:54-8.

Platt OS, Brambilla DJ, Rosse EF, Milner PF, Castro O, Steinberg MH, et al. Mortality in sickle cell disease-life expectancy and risk factors for early death. N Engl J. Med 1994; 330:1639-44.

Rodrigues DOW, Ferreira MCB, Campos EMS, Pereira PM, Oliveira CM, Teixeira MTB. História da triagem neonatal para doença falciforme no Brasil – capítulo de Minas Gerais. Rev Med Minas Gerais 2012; 22:1-128.

Agrawal RK, Patel RK, Shah V, Nainiwal L, Trivedi B. Hydroxyurea in Sickle Cell Disease: Drug Review. Indian J Hematol Blood Transfus 2014; 30:91-6.

McGann PT, Ware RE. Hydroxyurea therapy for sickle cell anemia. Expert Opin Drug Saf 2015; 14:1749.

Steinberg MH, Sebastiani P. Genetic modifiers of sickle cell disease. Am J Hematol 2012; 87:795-803.

CONITEC. Comissão Nacional de Incorporação de Tecnologias no SUS. Protocolos Clínicos e Diretrizes Terapêuticas Doença Falciforme – Relatório de Recomendação 2016: 29p.

Gomes LM, Reis TC, Vieira MM, Andrade-Barbosa TL, Caldeira AP. Quality of assistance provided to children with sickle cell disease by primary healthcare services. Rev Bras Hematol Hemoter 2011; 33:277-82.

Gomes LMX, Pereira IA, Torres HC, Caldeira AP, Viana MB. Acesso e assistência à pessoa com anemia falciforme na atenção primária. Acta Paul Enferm 2014; 27:348-55.

Haywood CJr, Beach MC, Lanzkron S, Strouse JJ, Wilson R, Park H, et al. A systematic review of barriers and interventions to improve appropriate use of therapies for sickle cell disease. J Natl Med Assoc 2009; 101:1022-33.

Gomes LM, Vieira MM, Reis TC, Andrade-Barbosa TL, Caldeira AP. Understanding of technical education level professionals regarding sickle cell disease: a descriptive study. Online Braz J Nurs 2013; 12:482-90.

Araújo PIC. O autocuidado na doença falciforme. Rev Bras Hematol Hemoter 2007; 29:239-46.




DOI: https://doi.org/10.23954/osj.v5i4.2624

Refbacks

  • There are currently no refbacks.


Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.

Open Science Journal (OSJ) is multidisciplinary Open Access journal. We accept scientifically rigorous research, regardless of novelty. OSJ broad scope provides a platform to publish original research in all areas of sciences, including interdisciplinary and replication studies as well as negative results.