Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?
Moura MC, Wutzki HC, Voos MC, Resende MB, Reed UC, Hasue RH.
Arq Neuropsiquiatr. 2015. 73(1):52-57.
This study investigated in Duchenne Muscular Dystrophy possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers.
Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the MFM and the “Autoquestionnaire Qualité de vie Enfant Imagé”.
Higher caregivers’ burden was related to lower caregivers’ QOL and to higher patients’ ages.
Keywords: Duchenne muscular dystrophy, behavior, quality of life, motor activity.
Articles dans les revues scientifiques
Rasch analysis to evaluate the motor function measure for patients with facioscapulohumeral muscular dystrophy
Mul K, Horlings CGC, Faber CG, van Engelen BGM, Merkies ISJ. Int J Rehabil Res. 2021. 1;44(1):38-44. A Rasch analyses was performed on MFM data from 194 FSHD patients to assess clinimetric properties in this patient group.Rasch analysis revealed multiple limitations...
Assessment of the validity and reliability of the 32-item Motor Function Measure in individuals with Type 2 or non-ambulant Type 3 spinal muscular atrophy
Trundell D, Le Scouiller S, Le Goff L, Gorni K, Vuillerot C. PLoS One. 2020. 18;15(9):e0238786. This study sought to investigate the reliability, validity, and ability to detect change of MFM32 in subjects with Type 2 and non-ambulant Type 3 Spinal Muscular Atrophy...
Assessment of respiratory muscles and motor function in children with SMA treated by nusinersen
Gómez-García de la Banda M, Amaddeo A, Khirani S, Pruvost S, Barnerias C, Dabaj I, Bénézit A, Durigneux J, Carlier RY, Desguerre I, Quijano-Roy S, Fauroux B. Pediatr Pulmonol. 2021. 56(1):299-306. Respiratory muscles performance and lung function were evaluated in...
Association Between Health-Related Quality of Life and Motor Function in Ambulant and Nonambulant Duchenne Muscular Dystrophy Patients
Gocheva V, Schmidt S, Orsini AL, Hafner P, Schaedelin S, Rueedi N, Weber P, Fischer D.J Child Neurol. 2019. 34(14):873-885.Cross-sectional study assessing health-related quality of life (HRQOL) in ambulant and nonambulant patients with Duchenne muscular dystrophy, and...
Validity and Reliability of the 32-Item Motor Function Measure in 2- to 5-Year-Olds with Neuromuscular Disorders and 2- to 25-Year-Olds with Spinal Muscular Atrophy
Trundell D, Le Scouiller S, Gorni K, Seabrook T, Vuillerot C, SMA MFM Study Group.Neurol Ther. 2020. 9(2):575-584. Investigation of the validity and reliability of the MFM32 in individuals with neuromuscular disorders (NMD), including spinal muscular atrophy (SMA),...
Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome
Gocheva V, Hafner P, Orsini AL, Schmidt S, Schaedelin S, Rueedi N, Rubino-Nacht D, Weber P, Fischer D.J Patient Rep Outcomes. 2020. 16;4(1):59. Investigation of health-related quality of life (HRQOL), self-reported impairments and activities of daily living and...