Quality of Life of Family Caregivers of Patients with Duchenne Muscular Dystrophy

Abstract

Abstract Duchenne Muscular Dystrophy (DMD) is the most common type of dystrophy. The care provided to the patient with DMD is exhausting and can affect the quality of life (QoL) of caregivers. The objective of the study was to describe the QoL of family caregivers of patients with DMD, relating to sociodemographic and clinical aspects of the patients. This is a cross-sectional quantitative study performed at a rehabilitation institution in Goiânia, Goias. The sample consisted of 30 family caregivers and their patients with DMD. The instruments applied were: sociodemographic questionnaire; Scale Vignos; and Quality of Life Measure of the World Health Organization (WHOQOLbref). The mean age of the caregivers was 39.20 and the patients were 14.07 years. Most of the caregivers were female, had primary or secondary education. Symptoms of the disease began on average at 3.87 years of age. The mean score in the Vignos Scale was 7.13. The psychological domain of the WHOQOLbref had the highest mean (66.11%) and the lowest environment (55.52%). There was a negative correlation between the age of onset of symptoms and the psychological domain (r = -0.44; p = 0.01). There was a significant relationship between the transport medium and the environment domain (p = 0.05). Family caregivers present moderate QOL. The earlier the patients initiate the more favorable symptoms is the psychological aspect of the caregiver's QOL, suggesting that the earlier the diagnosis is the better the caregiver's QoL. Keywords: Quality of Life. Caregivers. Muscular Dystrophy, Duchenne. Resumo A Distrofia Muscular de Duchenne (DMD) e o tipo de distrofia mais comum. O cuidado prestado ao paciente com DMD e desgastante e pode afetar a qualidade de vida (QV) dos cuidadores. O estudo teve como objetivo descrever a QV de cuidadores familiares de pacientes com DMD, relacionando com aspectos sociodemograficos e clinicos dos pacientes. Trata-se de um estudo quantitativo, transversal, realizado em uma instituicao de reabilitacao de Goiânia - Goias. A amostra foi composta por 30 cuidadores familiares e seus pacientes com DMD. Os instrumentos aplicados foram: questionario sociodemografico; Escala Vignos; e Medida de Qualidade de Vida da Organizacao Mundial de Saude (WHOQOL- bref). A media de idade dos cuidadores foi de 39,20 e dos pacientes de 14,07 anos. A maioria dos cuidadores era do sexo feminino, possuia ensino fundamental ou medio. Os sintomas da doenca iniciaram em media com 3,87 anos de idade. A media da pontuacao na Escala Vignos foi de 7,13. O dominio psicologico do WHOQOL- bref apresentou maior media (66,11%) e o meio ambiente a menor (55,52%). Houve correlacao negativa entre a idade de inicio dos sintomas e o dominio psicologico (r=-0,44;p=0,01). Houve relacao significativa entre o meio de transporte e o dominio meio-ambiente (p=0,05). Os cuidadores familiares apresentam moderada QV. Quanto mais cedo os pacientes iniciam os sintomas mais favoravel e o aspecto psicologico da QV do cuidador, sugerindo que quando mais precoce e o diagnostico melhor e a QV do cuidador. Palavras-chave: Qualidade de Vida. Cuidadores. Distrofia Muscular de Duchenne.