Taking care of patients with Duchenne muscular dystrophy (DMD) can have significant effects on caregivers, leading to a lower health‐related quality of life, poor sleep quality, depression, pain, stress, sexual dysfunction, and lower self‐esteem, a review study reports.
Caregiving can also have a considerable negative impact on work life and productivity, according to the study, titled “Duchenne muscular dystrophy and caregiver burden: a systematic review” and published in the journal Developmental Medicine & Child Neurology.
Caregiver burden refers to the extent to which caregivers perceive that “caregiving has had an adverse effect on their emotional, social, ﬁnancial, physical, and spiritual functioning,” according to the authors of the study. As a result, rather than being a straightforward concept, it tends to be more multidimensional and subjective.
Consequently, when assessing caregiver burden, researchers look at a number of different variables including health-related quality of life, physical and mental health such as pain and depression, sleep quality, sexual function, and impact on everyday activities such as work life.
DMD is a disease characterized by progressive muscle degeneration, leading to a loss of ambulation, which requires them to receive care and assistance on a daily basis.
Generally, DMD is diagnosed around the age of 4, and children usually live at home with their parents throughout their lives, which means many DMD patients will be cared for by informal family caregivers.
Caregiving aspects include providing emotional and social support, assistance with basic and instrumental daily activities, and administration and organization of formal healthcare.
In recent years, many studies have looked into caregiver burden in neuromuscular diseases, including DMD. Researchers in this study sought to review this existing literature on the topic.
Through a search of multiple databases, they were able to identify a total of 21 peer-reviewed articles that reported on caregiver burden in DMD. Across the studies, more than 15 different aspects of caregiver burden were investigated either through surveys or interviews in 15 countries.
Results showed that caregiving in DMD was associated with a significant overall health burden. In particular, it was found that caregiving in DMD was frequently linked to lower health-related quality of life, poor sleep quality, reduced family function, depression, pain, stress, sexual dysfunction, and lower self-esteem.
Additionally, caregiving had a significant impact on work life and productivity. In fact, the mean percentage of caregivers who stopped working completely to care for a patient with DMD was 29% in Germany, 33% in Italy, 21% in Australia, and 50% or over in the U.K.
Studies also showed that caregivers experienced a signiﬁcant decrease in productivity while working.
“Providing informal care to a patient with DMD can be associated with a substantial burden,” the authors concluded.
However, they add, more research is needed to better understand the relationship between caregiver burden and progression of the disease.
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