Evolution of the quality of life of caregivers of patients with Duchenne muscular dystrophy

• Autor(a) principal: Oliveira, Lorrane Caroline de
• Data de Publicação: 2019
• Outros Autores: Eduardo, Iriana Moraes, Souza, Thaísa Fernandes, Medeiros, Lorena Gomes de, Prudente, Cejane Oliveira Martins, Ribeiro, Maysa Ferreira Martins
• Tipo de documento: Artigo
• Idioma: por
• Título da fonte: Saúde (Santa Maria)
• Texto Completo: https://periodicos.ufsm.br/revistasaude/article/view/33398
• topic: Caregivers; Duchenne Muscular Dystrophy; Quality of life; Cuidadores; Distrofia Muscular de Duchenne; Qualidade de vida

Objective: to analyze the evolution of the quality of life of caregivers of patients with Duchenne Muscular Dystrophy (DMD) after a year of rehabilitation, according to the degree of disease. Methods: quantitative and longitudinal Study, conducted in a rehabilitation institution in Goiânia-Goiás. The sample was composed of 27 patients with DMD and their family caregivers. The instruments were applied: demographic profile; Vignos Scale; and measure of quality of life of the World Health Organization (WHOQOL-bref). Results: mean age of carers was 39.44 years and patients of 14.59 years, the average scale of Vignos was 7.59 points. Vignos scale showed significant worsening after one year (p = < 0.001). With respect to the WHOQOL-bref, the domain environment showed the worst averages in the two collections, and the physical domain. There was no significant difference in the averages of the domains and WHOQOL-bref overall score after one year. There were decreases in psychological and social domains only caregivers whose children were more severe. Conclusion: Caregivers of patients more graves, which are in a phase of more advanced disease, require multidisciplinary care, because they were the ones who presented a worse quality of life after one year of follow-up.