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Original Investigation
DOI: 10.1016/j.rcreue.2017.04.002
Quality of life in a population with haemophilia: A cross-sectional study from a single haemophilia treatment center
Calidad de vida en una población con hemofilia: estudio de corte transversal en un centro de tratamiento de hemofilia
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Alexandra Fuenmayor Castañoa, Mauricio Jaramillo Restrepob, Fabio Salinas Duránc,
Corresponding author
fabios@une.net.co

Corresponding author.
a Instituto Neurológico de Colombia, Medellín, Colombia
b Integral IPS, Facultad de Medicina, Departamento de Medicina Interna, Universidad Pontificia Bolivariana, Medellín, Colombia
c Grupo Rehabilitación en Salud, Facultad de Medicina, Departamento de Medicina Física y Rehabilitación, Universidad de Antioquia, Medellín, Colombia
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Tables (3)
Table 1. Clinical and demographic characteristics of the population.
Table 2. Mean range of motion deficit.
Table 3. Scores of the different dimensions of the SF-36 in patients with moderate and severe haemophilia compared with a general population of Medellin (Colombia).
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Abstract
Introduction

In patients with haemophilia, quality of life can be affected by factors like arthropathy, age, and pain intensity.

Objective

To evaluate the health-related quality of life in patients with haemophilia in Medellin during 2014.

Patients and methods

An observational, descriptive, cross-sectional study was conducted on 60 patients with confirmed diagnosis of haemophilia. Demographic, clinical and lifestyle characteristics are described. Functional test were performed including measuring ranges of mobility and the six-minute walk test. The health-related quality of life (SF-36 and KIDSCREEN-27), disability (WHODAS II), pain (VAS), and depressive symptoms (PHQ-9) were also evaluated.

Results

A total of 59 patients agreed to participate in the study. The mean age was 28 years (SD ±14.8), with mild haemophilia in 5%, moderate haemophilia in 20.3%, and severe haemophilia in 74.5%. Almost all (96.6%) of the patients were under treatment with prophylaxis, and 84% of the patients were having physiotherapy. The main comorbidity was haemophilic arthropathy in 71% of cases, followed by dyslipidaemia (27%), overweight (20%), and smoking (11.8%). The six-minute walk test reported mean distance of 584.2m, and the SF-36 scores were similar to the general population.

Conclusion

This group of patients with haemophilia reported a quality of life as high as the general population in Colombia without haemophilia. This finding reiterated the importance of the treatment with prophylaxis and the active participation of patients in a rehabilitation program, which promotes functional independence and a healthy lifestyle.

Keywords:
Haemophilia
Health-related quality of life
Arthropathy
Physical activity
Resumen
Introducción

En pacientes con hemofilia la calidad de vida se puede afectar por factores como la artropatía, edad e intensidad del dolor.

Objetivo

Evaluar la calidad de vida relacionada con la salud en personas con hemofilia, en Medellín durante 2014.

Pacientes y métodos

Estudio descriptivo observacional de corte trasversal, realizado en 60 pacientes con hemofilia. Se describen las características demográficas, clínicas y de estilo de vida. Se realizó prueba funcional con medición de arcos de movilidad y test de marcha de 6 min, medición de calidad de vida relacionada con la salud (SF-36 y KIDSCREEN-27), evaluación de discapacidad (WHODAS II), dolor (EAV) y síntomas de depresión (PHQ-9).

Resultados

Cincuenta y nueve pacientes aceptaron participar en el estudio, edad promedio de 28 (SD±14.8) años, hemofilia leve 5%, moderada 20.3% y grave 74.5%. El 96.6% estaba en tratamiento con profilaxis y el 84% de los pacientes asistía a terapia física. La mayor comorbilidad fue artropatía hemofílica en el 71% de las personas, seguida de dislipidemia (27%), sobrepeso (20%) y tabaquismo (11.8%). La prueba de marcha reportó una distancia promedio de 584.2 metros y los puntajes del SF-36 fueron similares a los de la población general.

Conclusión

Este grupo de pacientes con hemofilia, reporta una calidad de vida tan alta como la población general colombiana sin hemofilia. Este hallazgo reitera la importancia del tratamiento con profilaxis y de la participación activa de los pacientes en un programa de rehabilitación que promueva la independencia funcional y un estilo de vida saludable.

Palabras clave:
Hemofilia
Calidad de vida
Artropatía
Actividad física

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