OBJECTIVE: The relationship between functional dependence and quality of life (QOL) in Duchenne muscular dystrophy (DMD) patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers. METHOD: This study included 35 boys (6-17 years) and respective caregivers (above 21 years). Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables. RESULTS: The occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers' burden was related to lower caregivers' QOL and to higher patients' ages.
OBJECTIVE: The relationship between functional dependence and quality of life (QOL) in Duchenne muscular dystrophy (DMD) patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMDpatients and QOL/burden of caregivers. METHOD: This study included 35 boys (6-17 years) and respective caregivers (above 21 years). Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables. RESULTS: The occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers' burden was related to lower caregivers' QOL and to higher patients' ages.
Authors: Jamie L Jackson; Christina X Korth; Carine E Leslie; Jennifer Cotto; May Ling Mah; Kan Hor; Linda Cripe; Samiah Al-Zaidy; Eric M Camino; Kathleen Church; Kelly J Lehman; Victoria Shay; Jerry R Mendell Journal: J Child Neurol Date: 2020-10-09 Impact factor: 1.987
Authors: S Ryder; R M Leadley; N Armstrong; M Westwood; S de Kock; T Butt; M Jain; J Kleijnen Journal: Orphanet J Rare Dis Date: 2017-04-26 Impact factor: 4.123
Authors: Kristin M Conway; Katy Eichinger; Christina Trout; Paul A Romitti; Katherine D Mathews; Shree K Pandya Journal: SAGE Open Med Date: 2019-03-02