Quality of life of hemophiliac patients and satisfaction with their prophylactic treatment in Colombia

Authors

Keywords:

Hemophilia A; Hemophilia B; Quality of life; Treatment satisfaction

Abstract

Background: Hemophilia is an X-linked congenital bleeding disorder caused by a deficiency of coagulation factors. By which the therapy with recombinant and factors coagulation protein is necessary all life. This causes both physical and psychosocial changes that affect the quality of life. The objective of this research was to determine the association between quality of life, treatment satisfaction, and clinical severity of vulnerable hemophiliac patients of Cartagena-Colombia. Methods: An observational study was conducted by reviewing medical records of hemophiliacs. Quality of Life (QoL) Questionnaire Hemophilia Mexico and treatment satisfaction (TS) questionnaires were applied to patients with Hemophilia in Cartagena-Colombia. Associations between QoL and clinical severity and bivariate correlations between QoL and TS were assessed. Results: 29 hemophiliac patients between 1 and 60 years old were evaluated. 80% of patients were classified with moderate and severe hemophilia. 76% of individuals presented high QoL and 24% an average QoL; low QoL dimensions were: Knowledge about the disease, risks, physical discomforts, emotional aspects, and school or work absenteeism. TS was high, with results of 5.74 ± 0.06 (0-6 scale). There were correlations between some variables of TS with values of R2> 0.1, p <0.01. Conclusions: QoL perception of patients was high despite their hemophiliac classification as moderate to severe, TS was high as well, showing a positive correlation with some QoL dimensions related directly with hemophilia and emotional aspects.

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References

Ministerio de salud y protección social, salud idete. Protocolo clínico para tratamiento con profilaxis de personas con hemofilia a severa sin inhibidores. 2015.

Cassis FRMY. Atención psicosocial para personas con hemofilia. WFH. 2007.

Stonebraker JS, Unidos E, Bolton-maggs PHB, Unido R, Soucie JM, Brooker M. H echos y C ifras informes de prevalencia de la hemofilia alrededor del mundo College of Management. Haemophilia. 2011;16(8):20-32.

Acuña Merchan Lizbeth et al. Situación de la Hemofilia en Colombia. 2019.

Consenso de médicos Especialistas en Hemofilia de la Republica Argentina. Guía de Tratamiento de la Hemofilia. Buenos Aires; 2011.

Cuellar F, Lozano J, Sarmiento J, Villanueva L, Alvarez ML, Murillo LM MM. De Las Hemofilias A y B En Medellin. Acta Medica Colomb. 1985;10(5):192-6.

Ermeo S, Ilva C, Onseca D, Estrepo C. Colombia Médica Hemofilia: diagnóstico molecular y alternativas de tratamiento Colombia Médica. Colomb Medica. 2007;38(3):308-15.

Fundación de la Hemofilia. Guía de Tratamiento de la Hemofilia. Fundacion de hemofilia. Buenos Aires; 2011.

García Barrado, Ana I. Valoracion de la Artropatia hemofiliza y su evolucion mediante escalas de radiologia simple y resonacia magnetica. Universidad de zaragoza; 2014.

Gilbert MS. Complicaciones Musculoesqueleticas De La Hemofilia: Las Articulaciones. Federacion Mundial de Hemofilia. 1892.

Merchán Rodríguez. Problemas ortopédicos del paciente hemofílico adulto Orthopaedic problems of adult hemophiliacs. Rev Ortop Traumatol. 2001;45(2):151-9.

Srivastava A., Brewer A. K, Mauser-Bunschoten EP, Key NS, Kitchen S, Llinas a., et al. Guidelines for the management of hemophilia. Haemophilia. 2013;19(1).

Benítez Aranda H., Castro Noriega Sonia., Esparza Flores María., González Martínez Francisco j. MRFJ. Algoritmos Ortopedia y rehabilitación en la hemofilia. 1.a ed. Biotherapies for life CSL Behring, editor. México D.F: Guías nacionales de tratamiento; 2015. 1-38 p.

Min salud i. protocolo clínico para tratamiento con profilaxis de personas con hemofilia a severa sin inhibidores. Bogota DC; 2015.

Osorio Guzmán Maricela, Marín Palomares Teresa BRGE& RONG. Calidad de Vida de Pacientes Pediátricos con Hemofilia. Consulta Externa de un Hospital Público de la Ciudad de México. Rev Psicol GEPU. 2013;4(1):11-26.

Sarmiento, S., Carruyo-Vizcaíno, C., Carrizo, E., Vizcaíno, J. C., Arteaga-Vizcaíno, M., Vizcaíno G. Funcionamiento social en niños hemofílicos. Análisis de encuesta para determinar factores psicopatológicos de riesgo. Rev Méd Chile. 2006;134: 53-59.

Srivastava a, Brewer a K, Mauser-Bunschoten EP, Key NS, Kitchen S, Llinas A, et al. Guidelines for the management of hemophilia. Haemoph Off J World Fed Hemoph. enero de 2013;19(1):e1-47.

Grass M, Fernando L. Calidad de vida y hemofilia: Una revisión de la literatura Quality of life and hemophilia: A literature review. Rev CES Psicol. 2015;8(1):169-91.

la Osorio Guzmán M, ia Bazán Riverón GE. Psychometric properties of the quality of life questionnaire in pediatric patients with hemophilia Mexico (QoLHMEX). Rev Electrónica Sicol Iztacala. 2012;15(3):1112-28.

Escobar-p J, Cuervo-Martínez A. Validez de contenido y juicio de expertos: UNA. Av En Medicion. 2008;6:27-36.

Ventura Cerda JM, Casado Gomez M A., Morales Gonzalez JM, Ortega Valin L, Ibarra Barrueta O, Escobar Rodriguez I. Caracteristicas psicomètricas de la escala de satisfaccion con el tratamiento antirretroviral (ESTAR): Estudio ARPAS (I). Farm Hosp. 2007;31(6):331-9.

Alviz Antistio., Martinez Julian., Caraballo Roger. CT. Adherencia al tratamiento antiretroviral y calidad de vida de pacientes VIH-SIDA de Cartagena desde la optica de la atencion farmaceutica. Vitae. 2013;57(s105):105.

Sousa ET De, Veloso HH, Silva NDA Da, Araújo JSM De. Perfil epidemiológico dos portadores de hemofilia do hemocentro da Paraíba. Rev Odontológica Bras Cent. 2013;22(61):103-9.

Acuña Merchán Lizbeth, Sánchez Quintero patricia, Soler Voney Luis Alberto AL fernanda. La situacion de la Hemofilia en Colombia 2015. Cuenta de Alto Costo: Fondo Colombiano de enfermedades de Alto Costo. 2015;1-95.

Dekoven M, Wisniewski T, Petrilla a., Holot N, Lee WC, Cooper DL, et al. Health-related quality of life in hemophilia patients with inhibitors and their caregivers. Haemophilia. 2013;19(2):287-93.

Mackensen V, Gringeri A, Siboni SM, Mannucci PM. Health-related quality of life and psychological well-being in elderly patients with haemophilia. Haemoph Off J World Fed Hemoph. mayo de 2012;18(3):345-52.

Ferreira AA, Leite ICG, Bustamante-Teixeira MT, Corrêa CSL, da Cruz DT, Rodrigues DDOW, et al. Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center. Rev Bras Hematol E Hemoter. enero de 2013;35(5):314-8.

Cerdá, Ventura. Martín C MVerdugo, Tébenes Cortés, Casado Gómez. Adherence, satisfaction and health-related quality of life in HIV-infected patients with antiretroviral therapy in Spain. The ARPAS study. Farm Hosp. 2014;38(4):291-9.

Carruyo-Vizcaíno Cecilia, Gilberto Vizcaíno Cecilia, Carrizo Edgardo, Arteaga-Vizcaíno Melvis SS y V-CJennifer. Actitud de los Individuos Adultos con Hemofilia hacia su Enfermedad. Invest Clín. 2004;45(3).

Vallerand RJ, Deshaies P, Cuerrier JP, Pelletier LG, Mongeau C. Ajzen and Fishbein’s Theory of Reasoned Action as Applied to Moral Behavior: A Confirmatory Analysis. J Pers Soc Psychol. 1992;62(1):98-109.

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Published

2023-04-14

How to Cite

Antistio Alviz Amador, Arnulfo Tarón Dunoyer, & Antonio Díaz Caballero. (2023). Quality of life of hemophiliac patients and satisfaction with their prophylactic treatment in Colombia. AVFT – Archivos Venezolanos De Farmacología Y Terapéutica, 40(9). Retrieved from http://saber.ucv.ve/ojs/index.php/rev_aavft/article/view/26175