文章基本信息

标题：Evaluation tools for quality life improvements for patients with Duchenne Muscular Dystrophy: a systematic review
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作者：Andréa Victória Oliveira Santos ; Lorenna Emília Sena Lopes ; Iani Miranda Pinto 等
期刊名称：Research, Society and Development
电子版ISSN：2525-3409
出版年度：2020
卷号：9
期号：9
页码：1-19
DOI：10.33448/rsd-v9i9.7397
出版社：Grupo de Pesquisa Metodologias em Ensino e Aprendizagem em Ciências
摘要：Objetivo: identificar os instrumentos de avaliação utilizados para mensurar a qualidade de vida em pacientes com Distrofia Muscular de Duchenne. Metodologia: foi realizada uma revisão sistemática dos artigos publicados de 2007 a 2017 sobre os instrumentos de avaliação de qualidade de vida em pacientes com Distrofia Muscular de Duchenne, pesquisados em três bases de dados: SciELO, PubMED e LILACS. Resultados: seis artigos atenderam aos critérios de inclusão e os instrumentos referidos foram: Life Satisfaction Index for Adolescents; Quality of Life Evaluation Scale; Medical Outcomes Study 36; World Health Organization Quality of Life Instrument; Health Related Quality of Life Questionnaire for Children and Young People and their Parents e Pediatric Quality of Life Inventory. Conclusões: os instrumentos para avaliação da qualidade de vida em pacientes com Distrofia Muscular de Duchenne são essenciais para determinar e apresentar uma efetividade no tratamento voltado para suas principais dificuldades. No entanto, a falta de uma escala específica para esse diagnóstico interfere nos escores reais da qualidade de vida desses pacientes.
其他摘要：Introduction: Duchenne Muscular Dystrophy (DMD) is characterized by membrane dissociation, resulting in the breakdown of the musculoskeletal fiber. Objective: to identify the assessment tools used to measure the quality of life in patients with DMD. Methodology: A systematic review of articles published from 2007 to 2017 on QOL assessment tools in patients with DMD was conducted in the SciELO, PubMED and LILACS databases. Results: 6 articles met the inclusion criteria, using the QOL assessment tools; Life Satisfaction Index for Adolescents; Quality of Life Evaluation Scale; Medical Outcomes Study 36; World Health Organization Quality of Life Instrument; Health Related Quality of Life Questionnaire for Children and Young People and their Parents e Pediatric Quality of Life Inventory. Conclusions: the tools for the evaluation of quality of life in patients with Duchenne Muscular Dystrophy (DMD) are essentials to determinate and to present an effective treatment focused on patient’s priorities and their main difficulties. However the lack of a validated scale specifically focused on this diagnostic interferes in the real score of those patients quality of life.
关键词：Duchenne muscular dystrophy; Quality of life; Questionnaire; Instruments.