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Scientific Articles

Duchenne muscular dystrophy and caregiver burden: a systematic review

key information

source: Developmental Medicine & Child Neurology

year: 2018

authors: Landfeldt E, Edström J, Buccella F, Kirschner J, Lochmüller H


To conduct a systematic literature review of caregiver burden in Duchenne muscular dystrophy (DMD).

We searched Embase, Web of Science, and PubMed for full-text articles reporting results from studies of caregiver burden in DMD.

We identified 483 unique publications. Of these, 450 were excluded after title and abstract screening, and 12 after full-text review. A total of 21 articles were included for data synthesis. Results encompassing more than 15 aspects of caregiver burden, investigated through surveys and / or interviews across 15 countries, were identified in the literature. Caregiving in DMD was frequently associated with impaired health-related quality of life, poor sleep quality, reduced family function, depression, pain, stress, sexual dysfunction, and / or lower self-esteem, as well as a considerable impact on work life and productivity.

organization: Karolinska Institutet, Sweden; Mapi Group, Sweden; Saco, Sweden; Parent Project Onlus, Italy; University of Freiburg, Germany

DOI: 10.1111/dmcn.13934

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