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2022, Number 2

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Rev Cubana Hematol Inmunol Hemoter 2022; 38 (2)

Quality of life related to the health of people with hemophilia in Northeast Brazil

Vieira NS, Alves PAG, da Silva FJA, Caldas LTR, da Silva MGC

Language: Spanish
References: 29
Page: 1-14
PDF size: 417.39 Kb.


ABSTRACT

Introduction: Hemophilia is characterized by the occurrence of frequent bleeding and serious musculoskeletal conditions in patients that cause physical, social and psychological damage and directly affect their health-related quality of life.
Objective: To evaluate the quality of life of people with hemophilia in the northeast of Brazil.
Methods: Quantitative cross-sectional epidemiological study conducted with 13 people with hemophilia from a Blood Bank in northeastern Brazil. Data collection was performed by applying a sociodemographic and clinical questionnaire and Haem-A-Qol, used to assess the quality of life of people with hemophilia. Raw and mean values were calculated overall for all domains and then for each domain so that they could be displayed.
Results: A total average of 30,94 was obtained in relation to the ten domains evaluated. The domains with the highest averages were "physical health" with 49,23 and "coping" with 35,89 and with the lowest average was "family planning".
Conclusions: The research participants have an unsatisfactory quality of life in relation to physical health and coping, and satisfactory in relation to relationships and sexuality.


REFERENCES

  1. Bernal YAA. Significados de ser portadoras de hemofilia. Rev. Cienc. Cuidad. 2018;15(1):18-33. DOI: https://doi.org/10.22463/17949831.12231.

  2. Ministério da Saúde (MS). Secretaria de Atenção à Saúde. Departamento de Atenção Especializada e Temática. Perfil das coagulopatias hereditárias no Brasil: 2018. Brasília: Ministério da Saúde; 2019 [acceso 06/07/2021]; Disponible en: https://www.hemofiliabrasil.org.br/noticias/detalhe/perfil-das-coagulopatias-hereditarias-no-brasil-2019

  3. Sayago M, Lorenzo C. O acesso global e nacional ao tratamento da hemofilia:reflexões da bioética crítica sobre exclusão em saúde. Interface (Botucatu, Online). 2020;24:e180722. DOI: https://doi.org/10.1590/Interface.1807223.

  4. World Federation of Hemophilia (WFH). Symptoms and diagnosis. Montréal, Québec. 2012 Online [acceso 07/05/2020]. Disponible en: https://wfh.org/en/page.aspx?pid=6404.

  5. Álzate JDV, Sánchez LMM, Jaramillo LIJ. Calidad de vida: un aspecto olvidado En el paciente con hemofilia. Arch Med. 2018;18(1):172-80. DOI: https://doi.org/10.30554/archmed.18.1.2584.20185.

  6. Baek HJ, Park YS, Yoo KY, Cha JH, Kim YJ, Lee KS. Health-related quality of life of moderate and severe haemophilia patients: Results of the haemophilia-specific quality of life index in Korea. PLoS ONE. 2020;15(9):e0238686. DOI: https://doi.org/10.1371/journal.pone.02386866.

  7. Sánchez LMM, Cardona VJ, Ramírez PS, Gázquez MLAR. Perfil clínico y epidemiológico de pacientes con hemofilia registrados en la Liga de Hemofílicos de Antioquia (Colombia). Rev Med Risaralda. 2017;23(1):34-7. DOI: https://10.22517/25395203.93847.

  8. Rezende SM. Avaliação de qualidade de vida em hemofilia. Rev Bras Hematol Hemoter. 2009;31(6):406-407. DOI: https://doi.org/10.1590/S1516-848420090006000058.

  9. Bimanis J, Medina T. Calidad de vida del paciente hemofílico desde la mirada del Pensamiento Complejo de Edgar Morín. Salus. 2015 [acceso 07/03/2021];19(Suppl):11-5. Disponible en: http://ve.scielo.org/scielo.php?script=sci_arttext&pid=S1316-713820150004000039.

  10. Instituto Brasileiro de Geografia e Estatística (IBGE). Cidades. 2017[acceso 07/03/2021]. Disponible en: https://cidades.ibge.gov.br/brasil/ce/iguatu/panorama10.

  11. Centro de Hematologia e Hemoterapia do Ceará (HEMOCE). Banco de Sangre de Iguatu. Online [acceso 17/04/2021]. Disponible en: https://www.hemoce.ce.gov.br/index.php/Bancode Sangreregionaliguatu11.

  12. Trindade GC, Viggiano LGL, Brant ER, Lopes CAO, Faria ML, Ribeiro PHNS, et al. Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haemo-A-Qol questionnaires. Rev Bras Hematol Hemoter. 2019;41(4):335-41. DOI: https://doi.org/10.1016/j.htct.2019.03.01012.

  13. Von Mackensen S, Gringeri A. Development and pilot testing of a disease-specific quality of life questionnaire for adult patients with haemophilia (Haem-A-QoL). Blood. 2004;104(11):2214. DOI: https://doi.org/10.1182/blood.V104.11.2214.221413.

  14. Von Mackensen S, Campos IG, Acquadro C, Strandberg-Larsen M. Cross-cultural adaptation and linguistic validation of age group-specific haemophilia patient-reported outcome (PRO) instruments for patients and parents. Haemophilia. 2013;19:e73-83. DOI: https://10.1111/hae.1205414.

  15. Conselho Nacional de Saúde (CNS). Resolução nº 466, de 12 de dezembro de 2012. Aprova normas regulamentadoras envolvendo pesquisas com seres humanos. Brasília: Diário Oficial da União, 2013 [acceso 07/07/2021]; Disponible en: https://conselho.saude.gov.br/ultimas_noticias/2013/06_jun_14_publicada_resolucao.html

  16. Feijó AM, Schwartz E, Lise F, Santos BP, Spagnolo LML. Características sociodemográficas de homens com hemofilia no sul do Brasil. Ciênc. Cuid. Saúde. 2018;17(4):2-8. DOI: https://10.4025/cienccuidsaude.v17i4.4504816.

  17. Ferreira DB, Souza LC, Soares ML, Sartorelo DRH, Pereira LC, Garcia KR. Perfil dos hemofílicos de uma associação de pacientes de Brasília - DF, Brasil. Revisa. 2021;10(1):73-82. DOI: https://doi.org/10.36239/revisa.v10.n1.p73a8217.

  18. Santos R, Figueirôa G, Machado B, Mamede C, Gois L, Silva Junior M. Frequência de alterações posturais em hemofílicos. Rev. Pesqui. Fisioter. 2018;8(1):24-36. DOI: https://doi.org/10.17267/2238-2704rpf.v8i1.160118.

  19. Ferreira D, Silva ELL, Borges DDL, Noueira TA, Silva HJN, Oliveira KBV. Prevalência das coagulopatias hereditárias nos portadores atendidos no centro de Hematologia e hemoterapia do Piauí - HEMOPI. Braz. J Surg Clin Res. 2018;24(1):56-60. Disponible en: https://www.mastereditora.com.br/periodico/20180902_011313.pdf19.

  20. Ministério da Saúde (MS). Portaria nº 364, de 6 de maio de 2014. Aprova o Protocolo de Uso de Profilaxia Primária para Hemofilia Grave. Online [acceso 23/08/2020]. Disponible en: http://fehosp.com.br/files/circulares/bb44c370c9e101012225b2881ed10197.pdf20.

  21. Ministério da Saúde (MS). Secretaria de Atenção à Saúde. Departamento de Atenção Especializada e Temática. Manual de Hemofilia. Brasília: Ministério da Saúde, 2015 [acceso 26/08/2020]; Disponible en: https://bvsms.saude.gov.br/bvs/publicacoes/manual_hemofilia_2ed.pdf

  22. Mercan A, Sarper N, Inanir M, Mercan HI, Zengin E, Kiliç EÇ. et al. Hemophilia-specific quality of life index (Haemo-qol AND Haem-A-qol questionnaires) of children and adults: Result of a Single Center from Turkey. Pediatr Hematol Oncol. 2010;27:(6):449-61. DOI: https://10.3109/08880018.2010.48993322.

  23. Varaklioti A, Kontodimopoulos N, Katsarou O, Niakas D. Psychometric properties of the Greek Haem-A-QoL for measuring quality of life in Greek haemophilia patients. Biomed Res Int. 2014:968081. DOI: https://10.1155/2014/96808123.

  24. Varaklioti A, Kontodimopoulos N, Niakas D, Kouramba A, Katsarou O. Health-Related Quality of Life and Association with Arthropathy in Greek Patients with Hemophilia. Clin Appl Thromb Hemost. 2018;24(5):815-21. DOI: https://10.1177/107602961773304124.

  25. Gomes Jorge MS, Schreiner Moreira I, Felimberti G, Wibelinger LM. Abordagem fisioterápica nadorena qualidade de vida de um indivíduo com artritehemofílica. Relato de caso. Rev Dor. 2016 [acceso 07/03/2021];17(1):65-8. DOI: https://10.5935/1806-0013.2016001625.

  26. Araújo MB, Albuquerque IMN, Pires EVM, Ribeiro MA, Silva MAM. Implicações nas atividades laborais de pessoas com hemofilia acompanhadas em um Banco de Sangre regional do Ceará. Essentia (Sobral). 2019;20(1):35-40. DOI: https://doi.org/10.36977/ercct.v20i1.21926.

  27. Okide CC, Eseadi C, Koledoye UL, Mbagwu F, Ekwealor NE, Okeke NM, et al. Challenges facing community-dwelling adults with hemophilia: Implications for community-based adult education and nursing. J Int Med Res. 2020;48(1):300060519862101. DOI: https://10.1177/030006051986210127.

  28. Silva JCL, Dos Santos GL, De Sousa MNA. Qualidade de vida dos hemofílicos: análise pósimplantação do hemonúcleo e distribuição de fatores de coagulação. C&D-Rev Eletrônica da Fainor. 2020;13(1):124-39. DOI: https://10.11602/1984-4271.2020.13.1.828.

  29. Rambod M, Sharif F, Molazem Z, Khair K, Von Mackensen S. Health-related quality of life and psychological aspects of adults with hemophilia in Iran. Clin Appl Thromb Hemost. 2018;24(7):1073-81. DOI: https://10.1177/107602961875895429.




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