Desenvolvimento e avaliação de jogo eletrônico interativo para o processo de aprendizagem do tratamento de crianças e adolescentes com distrofia muscular de Duchenne

This paper aims to present the development and evaluation process of an interactive video game created to promote the construction of knowledge about the rehabilitation program of children and adolescents with Duchenne Muscular Dystrophy (DMD). The game content data collection was done by brainstorming with a multidisciplinary team of health professionals (physiotherapists and occupational therapists) and patients with DMD. Data were analyzed and separated into three categories: genetic, pathophysiology and stretching programs. This information was transformed into a storyboard and a team of engineers made the programming and implementation of the game. Lastly, the electronic game was tested by DMD patients by a pre-post-game questionnaire. The results showed an increase in the repertoire related to rehabilitation after they played the game. The interactive electronic game DuchsVille was created, evaluated and was able to be used as a tool of information technology applicable to favor processes of teaching and learning about rehabilitation aspects of DMD, bringing the technical and scientific logic of health care providers closer to the logic of common sense of the population.O trabalho visa apresentar o processo de desenvolvimento e avaliação de um jogo eletrônico interativo criado para favorecer a construção de conhecimento sobre o programa de reabilitação de crianças e adolescentes com Distrofia Muscular de Duchenne (DMD). A coleta de dados do conteúdo do jogo foi feita por brainstorms com equipe multidisciplinar de profissionais da saúde (fisioterapeutas e terapeutas ocupacionais) e pacientes com DMD. Os dados foram analisados e separados em três categorias: genética, fisiopatologia e programas de alongamento. Transformou-se essas informações em storyboard e realizou-se a programação e execução do jogo feitas por uma equipe de engenheiros. Por fim, o jogo eletrônico foi testado por pacientes com DMD por meio de um questionário pré-pós-jogo. Os resultados demonstraram aumento no repertório relacionado à reabilitação pré-adquirido e pós-jogo. O jogo eletrônico interativo DuchsVille foi criado, avaliado e pode ser utilizado como uma ferramenta de tecnologia de informação aplicável para favorecer processos de ensino e aprendizagem sobre aspectos de reabilitação na DMD, aproximando o diálogo da lógica técnico-científica dos profissionais da saúde da lógica do senso comum da população

Caracterização da passagem de bipedestação para sedestação no solo e da passagem de decúbito dorsal no solo para bipedestação em crianças normais

OBJECTIVE:To characterize the passage from standing to sitting in the floor and the passage from dorsal decubitus in the floor to standing in normal children. PROCEDURE: It was analyzed the changes of postures in 40 healthy and normal male children by film records. Each child was filmed accomplishing the changes three times, resulting 120 registrations and observations. RESULTS: We demonstrated a typical posture pattern for the passage from sitting in the floor to standing and from dorsal decubitus to standing in normal male children, establishing a normality pattern for comparison with pathological cases, also determining, the time of accomplishment of these activities. CONCLUSION: We found a normality pattern of the passages of posture studied in normal children.OBJETIVO: caracterizar a passagem de bipedestação para sedestação no solo e a passagem de decúbito dorsal no solo para bipedestação em crianças normais. PROCEDIMENTO: Analisou-se as mudanças de posturas de bipedestação para sedestação e da passagem de decúbito dorsal para bipedestação em 40 crianças saudáveis e normais, do sexo masculino, por meio de filmagem. Cada criança foi filmada realizando as mudanças de postura três vezes, totalizando 120 registros e observações. RESULTADOS: Demonstrou-se um padrão de postura típico para a passagem de bipedestação para sedestação no solo e de decúbito dorsal no solo para bipedestação em crianças normais do sexo masculino, estabelecendo um padrão de normalidade para comparação com casos patológicos, determinando também, o tempo de realização destas atividades. CONCLUSÃO: Encontrou-se um padrão de normalidade para mudança de postura estudada em crianças normais

Elaboration and functional evaluation scale reliability analysis of sitting and standing from chair for Duchenne muscular dystrophy (DMD) carriers

O objetivo foi construir escala do sentar e levantar da cadeira para distrofia muscular de Duchenne (EAF-1), testar confiabilidade e correlacioná-la com tempo de execução, idade e Escala de Vignos. A construção ocorreu por meio da avaliação de 30 crianças com distrofia muscular de Duchenne (5 a 12 anos), totalizando 120 registros do sentar e levantar. Utilizou-se Índice de Correlação Intra-Classe (ICC) e Coeficiente Kappa Ponderado. A escala abrange três fases para o sentar e três para o levantar, com escores de 0 a 44 e 0 a 54 respectivamente. Encontrou-se na repetibilidade ICC >= 0,91 e Kappa > 0,91 para o sentar; ICC >= 0,91 e Kappa > 0,87 para o levantar e na reprodutibilidade ICC >= 0,90 e Kappa > 0,88 para o sentar; ICC >= 0,89 e Kappa > 0,94 para o levantar; boa correlação com tempo do sentar e levantar (r = 0.69 e r = 0.66) e entre idade e sentar (r = 0.44). EAF-1 apresentou confiabilidade de excelente a muito boa, permitindo avaliação detalhada da função.The aim was to construction a scale of sitting and standing from chair for Duchenne muscular dystrophy (EAF-1), to test reliability and to correlate it with running time, age and Vignos scale. The construction occurred by means of 30 childrens evaluation with Duchenne muscular dystrophy (aged 5-12 years), totalizing 120 registers of sitting and standing. It was used Intraclass Correlation Coefficient (ICC) and Weighted Kappa Coefficient. The scale comprises three phases for sitting and three for standing, with scores from 0 to 44 and from 0 to 54, respectively. In the repeatability was found ICC 0,91 and Kappa > 0,91 for sitting; ICC >= 0,91 and Kappa > 0,87 for standing and in the reproducibility ICC >= 0,90 and Kappa > 0,88 for sitting; ICC >= 0,89 and Kappa > 0,94 for standing; good correlation with time of sitting and standing (r = 0.69 e r = 0.66) and between age and sitting (r = 0.44). Excellent reliability was presented by EAF-1, which permits detailed evaluation function

Responsiveness of the functional evaluation scale of sitting and rising from the chair for patients with Duchenne muscular dystrophy (FES-DMD-D1), one year follow-up

Objetivo: Avaliar a responsividade da escala de avaliação funcional para pacientes com distrofia muscular de Duchenne (DMD), domínio 1 - sentar e levantar da cadeira (FES-DMD-D1). Método: Estudo observacional, retrospectivo e longitudinal (seguimento por um ano). Foi estudada, utilizando o software FES-DMD-DATA, uma amostra de 150 avaliações da atividade de sentar e levantar da cadeira, a partir de um banco de imagens com filmes de 30 crianças com DMD, executando atividades funcionais, avaliadas a cada três meses, em um período de um ano. A avaliação da FES-DMD-D1 foi aplicada por fisioterapeuta treinado, considerando os escores das fases de flexão, de contato e de extensão da atividade de sentar na cadeira e, das fases de flexão, de transferência e de extensão da atividade de levantar da cadeira. Para avaliar a responsividade da FES-DMD-D1 foram analisadas as avaliações dos períodos de seguimento de três, seis, nove e doze meses, por meio do tamanho do efeito (TE) e da média de resposta padronizada (MRP). Resultados: A responsividade da atividade de sentar na cadeira foi considerada de pequena a moderada nas avaliações a cada três meses (TE de 0,22 a 0,49 e MRP de 0,32 a 0,54), de pequena a moderada a cada seis meses (TE de 0,50 a 0,61 e MRP de 0,41 a 0,61), de pequena a grande a cada nove meses (TE de 0,69 a 1,11 e MRP de 0,49 a 0,79) e grande no período de um ano (TE de 1,07 e MRP de 0,80). Na atividade de levantar da cadeira, a responsividade foi pequena a cada três meses (TE de 0,21 a 0,35 e MRP de 0,28 a 0,45), de pequena a grande a cada seis meses (TE de 0,45 a 0,62 e MRP de 0,50 a 0,96), de moderada a grande a cada nove meses (TE de 0,76 a 0,89 e MRP de 0,74 a 1,47) e grande em um ano (TE de 1,28 e MRP de 1,24). Conclusão: A FES-DMD-D1 mostrou responsividade de moderada a grande, aumentando gradativamente nos intervalos de seis, nove e doze meses. Dessa forma, é indicado o uso da FES-DMD-D1 a partir de seis mesesObjective: To evaluate the responsiveness of the functional evaluation scale for patients with Duchenne muscular dystrophy (DMD) - domain 1: sitting and standing from the chair (FES-DMD-D1). Method: Observational, retrospective and longitudinal study with one year follow-up. A sample of 150 evaluations of sitting and rising from the chair was studied, using the FES-DMD-DATA software, from a bank of images of 30 children with DMD performing functional activities, evaluated every three months in a period of one year. FES-DMD-D1, which explores the scores of the phases of flexion, contact, extension of the activity of sitting on the chair, and of the phases of flexion, transference, extension of the activity of rising from the chair was applied by a trained physiotherapist. To evaluate the responsiveness of FES-DMD-D1 we considered the follow-up evaluations after three, six, nine and twelve months. The analysis used the effect size (ES) and standardized response mean (SRM). Results: The responsiveness of sitting on the chair was considered low to moderate in evaluations with three months intervals (ES from 0.22 to 0.49 and SRM from 0.32 to 0.54), low to moderate with six months intervals (ES from 0.50 to 0.61 and SRM from 0.41 to 0.61), low to high in nine months intervals (ES from 0.69 to 1.11 and SRM from 0.49 to 0.79) and high in the reassessment after one year (ES from 1.07 and SRM from 0.80). The responsiveness of the rising from the chair was low in three months (ES from 0.21 to 0.35 and SRM from 0.28 to 0.45), from low to high in six months (ES from 0.45 to 0.62 and SRM from 0.50 to 0.96), moderate to high in nine months (ES from 0.76 to 0.89 and SRM from 0.74 to 1.47) and high in a year (ES from 1.28 and SRM from 1.24). Conclusion: FES-DMD-D1 showed moderate to high responsiveness, gradually increasing for intervals of six, nine and twelve months. Thus, the use of FES-DMD-D1 is indicated from six month

Development of an Evaluation Scale for Sitting and Standing From the Ground for Children With Duchenne Muscular Dystrophy

The authors developed an evaluation scale for sit-stand from the ground for children with Duchenne muscular dystrophy (DMD) and tested its reliability. The construction occurred in stages: (a) the characterization of the movement in healthy children, (b) the characterization of the movement in children with DMD, (c) the elaboration of the 1st version of the scale and the manual, (d) the evaluation by experts and readjustments, and (e) the analysis of inter- and intraexaminer reliability and correlation with the Vignos Scale, age, and time for the execution of the activity. The scale comprehended 3 phases for sitting and 5 for the standing. A very good repeatability of the measures of sitting and standing (ICC = 0.89 and 0.84, respectively) and excellent reproducibility (ICC = 0.93 and 0.92, respectively) was demonstrated. The Kappa coefficient for the 8 phases in the interexaminer analysis varied from 0.77 to 1.00 (excellent reliability), and in the intraexaminer analysis varied from 0.80 to 1.00 (excellent reliability). Good correlation was found between the variables on the Vignos Scale (age: r = 0.58; stand: r = 0.56). The scale is a reliability instrument that allows evaluation of the activity of sitting and standing in children with DMD

Compensatory movements during functional activities in ambulatory children with Duchenne muscular dystrophy Movimentos compensatórios durante atividades funcionais em crianças deambuladoras com distrofia muscular de Duchenne

ABSTRACT Objective: During the transitional phase (ambulatory to non-ambulatory), synergies characterize the evolution of Duchenne muscular dystrophy (DMD). This study was performed to describe and quantify compensatory movements while sitting down on/rising from the floor and climbing up/down steps. Method: Eighty videos (5 children × 4 assessments × 4 tasks) were recorded quarterly in the year prior to gait loss. Compensatory movements from the videos were registered based on the Functional Evaluation Scale for DMD. Results: The most frequently observed compensatory movements were upper limb support on lower limbs/floor/handrail during all the tasks and lumbar hyperlordosis, trunk support on handrail, equinus foot, increased base of support, non-alternated descent, and pauses while climbing up/down steps. Conclusion: Climbing up/down steps showed a higher number of compensatory movements than sitting down on/rising from the floor, which seemed to be lost before climbing up/down steps in ambulatory children with DMD. Keywords: Duchenne muscular dystrophy, evaluation, scales. RESUMO Objetivo: Durante a fase de transição (deambulador -não-deambulador), sinergias musculares caracterizam a evolução da distrofia muscular de Duchenne (DMD). Este estudo visou descrever e quantificar os movimentos compensatórios durante o sentar/levantar do solo, subir/descer degraus. Oitenta vídeos (5 crianças × 4 avaliações × 4 tarefas) foram gravados trimestralmente durante o ano que antecedeu a perda da marcha. Método: Os movimentos compensatórios dos vídeos foram registrados utilizando a Escala de Avaliação Funcional para DMD. Resultados: Os movimentos compensatórios mais frequentemente observados foram apoio de membros superiores nos membros inferiores/solo/corrimão durante todas as tarefas funcionais e hiperlordose lombar, apoio de tronco no corrimão, pés equinos, aumento da base de suporte, descida não alternada e pausas ao subir/descer degraus. Subir/descer degraus apresentou um número maior de movimentos compensatórios do que sentar/levantar do solo. Conclusão: Sentar/levantar do solo foram habilidades perdidas antes de subir/descer degraus em crianças com DMD. Palavras-chave: distrofia muscular de Duchenne, avaliação, escalas

Compensatory movements during functional activities in ambulatory children with Duchenne muscular dystrophy

Objective: During the transitional phase (ambulatory to non-ambulatory), synergies characterize the evolution of Duchenne muscular dystrophy (DMD). This study was performed to describe and quantify compensatory movements while sitting down on/rising from the floor and climbing up/down steps. Method: Eighty videos (5 children × 4 assessments × 4 tasks) were recorded quarterly in the year prior to gait loss. Compensatory movements from the videos were registered based on the Functional Evaluation Scale for DMD. Results: The most frequently observed compensatory movements were upper limb support on lower limbs/floor/handrail during all the tasks and lumbar hyperlordosis, trunk support on handrail, equinus foot, increased base of support, non-alternated descent, and pauses while climbing up/down steps. Conclusion: Climbing up/down steps showed a higher number of compensatory movements than sitting down on/rising from the floor, which seemed to be lost before climbing up/down steps in ambulatory children with DMD

How often should sitting and rising from a chair be evaluated in patients with Duchenne muscular dystrophy?

ABSTRACT Objective To determine how often sitting/rising from a chair should be assessed in Duchenne muscular dystrophy (DMD) patients to avoid redundant/missing data. Methods Sitting/rising from a chair was evaluated in 26 DMD children (5-12 yrs), in three-month intervals, over twelve months, with the Functional Evaluation Scale (domain sitting/rising from a chair). Scores were compared by effect sizes (ES) and standardized response means (SRM) (responsiveness analysis). Results Sit-to-stand showed low-to-moderate responsiveness in three-month intervals (ES:0.23-0.32; SRM:0.36-0.68), moderate-to-high responsiveness in six-month intervals (ES:0.52-0.65; SRM:0.76-1.28), high responsiveness at nine-month (ES:0.84-0.91; SRM:1.26-1.64) and twelve-month intervals (ES:1.27; SRM:1.48). Stand-to-sit showed low responsiveness in three-month intervals (ES:0.26-0.49; SRM:0.37-0.42), moderate responsiveness in six-month intervals (ES:0.50-0.78; SRM:0.56-0.71), high responsiveness in nine-month (ES:0.94-1.00; SRM:0.84-1.02) and twelve-month intervals (ES:1.13; SRM:1.52). Conclusion Six months or longer intervals for reassessment are indicated to evaluate sitting/standing from a chair in DMD patients