Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

Abstract

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.Keywords: Duchenne muscular dystrophy, behavior, quality of life, motor activity. RESUMOObjetivo: A relação entre qualidade de vida e função motora de pacientes com distrofia muscular de Duchenne (DMD) e sobrecarga e qualidade de vida (QV) dos cuidadores não está clara na literatura. Esse estudo investigou possíveis relações entre dependência funcional/ QV de pacientes e sobrecarga/QV dos cuidadores em 35 meninos (6-17 anos) com DMD e respectivos cuidadores (acima de 21 anos). Método: Cada cuidador respondeu ao questionário de QV da Organização Mundial de Saúde e de sobrecarga de Zarit e o paciente foi avaliado com a medida de função motora e o Autoquestionnaire Qualité de vie Enfant Imagé. Correlações de Spearman e regressões lineares investigaram possíveis relações entre as variáveis. Resultados: A ocorrência de menor QV e maior sobrecarga entre cuidadores foi evidenciada, enquanto a dependência funcional dos pacientes não foi considerada fator

Quality of Life of Latin-American People with Neuromuscular Disorders and Their Families During the COVID-19 Pandemic

“…These correlations were positive, meaning better the child's HRQL better the parent's QoL. Associations between children's HRQL and parental and family functioning were previously explored by Baiardini et al (2011) and Soares de Moura et al (2015). Results from the present study go in line with these studies in terms of the impact a chronic condition may have on the family group.…”

“…Regarding family functioning, daily activities seem to be the most diminished dimension, similar to the results reported prior the pandemic (Baiardini et al, 2011). These results highlight the importance of considering caregivers health when evaluating people with complex diagnoses (Ho et al, 2021;Soares de Moura et al, 2015).…”

“…A worse child´s HRQL in the psychological dimension was associated with greater emotional impact on parents and a greater familiar cohesion (Baiardini et al, 2011). Other study did not find significant correlation between child´s HRQL and caregiver´s QoL but did find a correlation between child´s QoL and caregiver´s burden (Soares de Moura et al, 2015).…”

“…Caregiver role is often assumed by a family member, which causes an impact on caregiver´s quality of life and family functioning. Psychosocial aspects of quality of life seem to be the most severely affected in caregivers of children and adults with NMD (Landfeldt et al, 2016;Ortega, 2020;Ortega et al, 2021;Ortiz et al, 2013;Soares de Moura et al, 2015;Zhi et al, 2019). In some cases, parents have even reported even lower levels of QoL than their children (Bhullar et al, 2019).…”

A review of quality of life themes in Duchenne muscular dystrophy for patients and carers

“…Whilst not directly relevant to QoL they may provide further information about which QoL domains were regarded as important to patients and their families. These included, but are not limited to: initiatives to relieve family burden and improve carer well-being [18, 20, 33, 45, 46]; social skills training and modified activities inclusive of children with limited mobility [41]; education and care focused on optimising participation [43]; strategies to avoid diagnostic delay [23]; routine screening questionnaires and vigilance for signalling symptoms of pain, depression and anxiety in patients [43]; and improvements to welfare policies to simplify bureaucratic procedures [45].…”