Development and Reliability of the Functional Evaluation Scale for Duchenne Muscular Dystrophy, Gait Domain: A Pilot Study

Carvalho, Eduardo Vital de; Hukuda, Michele Emy; Escórcio, Renata; Voos, Mariana Callil; Caromano, Fátima Aparecida

doi:10.1002/pri.1605

Cited by 25 publications

(54 citation statements)

References 33 publications

(54 reference statements)

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“…The FES-DMD has four domains: sitting and rising from a chair 7 ; walking 8 ; climbing up and down steps 9 ; and sitting down on, and standing up from the floor 10 . Excellent intra-and interrater reliabilities of all domains have been demonstrated 7,8,9,10 . In the FES-DMD, the tasks are videoed, which reduces evaluation time and patient fatigue (caused by the repetition of the activities).…”

Section: The Functional Evaluation Scale For Duchenne Muscular Dystromentioning

confidence: 99%

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

Hukuda

Caromano

Escórcio

et al. 2017

Arq. Neuro-Psiquiatr.

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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

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Section: The Functional Evaluation Scale For Duchenne Muscular Dystromentioning

confidence: 99%

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

Hukuda

Caromano

Escórcio

et al. 2017

Arq. Neuro-Psiquiatr.

Self Cite

View full text Add to dashboard Cite

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“…for Duchenne Muscular Dystrophy -FES-DMD) apresentou confiabilidade intra e inter-examinadores para seus quatro domínios (Carvalho et al, 2014;Hukuda et al, 2013;Escorcio et al, 2011;Fernandes et al, 2010). Descreve e permite a pontuação dos movimentos compensatórios e o registro do tempo das atividades funcionais de sentar e levantar da cadeira (Hukuda et al, 2013), sentar e levantar do solo (Escorcio et al, 2011), subir e descer escada (Fernandes et al, 2010) e andar por 10 m (Carvalho et al, 2014) em crianças deambuladoras com DMD.…”

Section: A Escala De Avaliação Funcional Para Dmd (Functional Evaluatunclassified

“…Descreve e permite a pontuação dos movimentos compensatórios e o registro do tempo das atividades funcionais de sentar e levantar da cadeira (Hukuda et al, 2013), sentar e levantar do solo (Escorcio et al, 2011), subir e descer escada (Fernandes et al, 2010) e andar por 10 m (Carvalho et al, 2014) em crianças deambuladoras com DMD. A proposta desta escala é fornecer dados cinesiológicos de atividades funcionais importantes na rotina diária de pacientes com DMD, para auxiliar na avaliação e intervenção terapêutica.…”

Section: A Escala De Avaliação Funcional Para Dmd (Functional Evaluatunclassified

“…A FES-DMD propõe a filmagem das atividades, com o intuito de analisar as suas diferentes fases com mais precisão, evitar gasto energético excessivo do paciente, ou seja, sobrecarga do sistema musculoesquelético e fadiga muscular e gerar um banco permanente de imagens (Carvalho et al, 2014;Hukuda et al, 2013;Escorcio et al, 2011;Fernandes et al, 2010).…”

Section: A Escala De Avaliação Funcional Para Dmd (Functional Evaluatunclassified

“…Também se observa aumento da base de suporte, rotação medial do quadril e inclinação lateral de tronco, para compensar a fraqueza de abdutores do quadril. Em uma fase mais tardia, de transição para a cadeira de rodas, evidenciam-se hiperextensão de joelhos e aumento da dissociação de cinturas, para compensar a fraqueza também dos extensores de joelho (Carvalho et al, 2014;D'Angelo et al, 2009;Hsu & Furumasu, 1993). Na atividade de subir e descer degraus, além de aumentar a base de suporte (aumento da distância entre os pés), é possível apoiar-se na parede ou no corrimão, o que diminui a carga sobre os MMII.…”

Section: Controle E Comportamento Motor Na Distrofia Muscular De Duchunclassified

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Evolução do tempo e dos movimentos compensatórios durante a marcha e o subir e descer degraus em crianças com distrofia muscular de Duchenne

Martini¹

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AgradecimentosAgradeço a DEUS por me conceder o dom da vida, por me conduzir a ser uma pessoa melhor a cada dia e por iluminar os meus caminhos.Aos meus pais, José Ivan Martini e Leonor Ap. Ferreira Martini, pelo amor incondicional, por permitirem a minha formação pessoal e profissional com base na honestidade, no caráter e no respeito ao próximo.À minha irmã, Lais R. Martini, por estar sempre ao meu lado, torcendo por mim e por ser o meu exemplo de coragem e determinação. À Profa. Dra. Fátima Aparecida Caromano, que me abriu as portas para a realização deste trabalho, direcionando-me e acolhendo-me de forma muito atenciosa e carinhosa.À minha orientadora Profa. Dra. Mariana Callil Voos, por ter me possibilitado ser a sua primeira aluna de pós-graduação. A quem eu tanto admiro como pesquisadora, professora, fisioterapeuta, amiga, mãe... que me inspirou, me conduziu ao longo desses três anos a acreditar em meu potencial e a mergulhar nesse trabalho.

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Cost of Illness in Patients with Duchenne Muscular Dystrophy in Portugal: The COIDUCH Study

Labisa¹,

Andreozzi²,

Mota³

et al. 2021

PharmacoEconomics Open

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Objective The aim of this study was to estimate the cost of illness (COI) of Duchenne muscular dystrophy (DMD) and its relation to disease progression, using age as a proxy, and according to the ambulatory status of patients. Methods We conducted a cross-sectional study of patients diagnosed with DMD identified through the Portuguese Neuromuscular Patients Association (APN). Data regarding patient and caregiver demographics, patient health status, resource utilization and cost, and informal care were collected using a custom semistructured questionnaire. Labor productivity and absenteeism losses were captured using the Work Productivity and Activity Impairment questionnaire. Costs were valued using a societal perspective. Results A total of 46 patient-caregiver pairs were included, of which eight of the patients were ambulant and 38 were nonambulant. Age had a decreasing effect on COI, independent of the patient's disease stage. Annualized lifetime costs were at their highest in nonambulant patients around the mean age of loss of ambulation (10 years of age). The mean per patient stage-specific costs (year 2019 values) of DMD were estimated at €48,991 in the nonambulant stage and €19,993 in the ambulant stage. Direct nonmedical costs were the main cost drivers, followed by indirect costs. Conclusions Our results indicate a close relation between overall disease costs and disease progression. DMD is associated with a substantial economic burden, which appears to be larger around the time ambulation is lost (10 years of age). The availability of new therapeutic options that delay disease progression, especially loss of ambulation, may prove to be highly beneficial for not only patients with DMD but also their families and society.

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Development and Reliability of the Functional Evaluation Scale for Duchenne Muscular Dystrophy, Gait Domain: A Pilot Study

Abstract: This pilot version of FES-DMD-GD showed reliability and correlated to age and timed motor performance.

Cited by 25 publications

References 33 publications

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

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

Evolução do tempo e dos movimentos compensatórios durante a marcha e o subir e descer degraus em crianças com distrofia muscular de Duchenne

Cost of Illness in Patients with Duchenne Muscular Dystrophy in Portugal: The COIDUCH Study

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