{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T18:43:19Z","timestamp":1791830599475,"version":"4.3.4"},"reference-count":41,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2018,6,14]],"date-time":"2018-06-14T00:00:00Z","timestamp":1528934400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"published-print":{"date-parts":[[2018,10]]},"abstract":"<jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>\n                      To conduct a systematic literature review of caregiver burden in Duchenne muscular dystrophy (\n                      <jats:styled-content style=\"fixed-case\">DMD<\/jats:styled-content>\n                      ).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>\n                      We searched Embase, Web of Science, and PubMed for full\u2010text articles reporting results from studies of caregiver burden in\n                      <jats:styled-content style=\"fixed-case\">DMD<\/jats:styled-content>\n                      .\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      We identified 483 unique publications. Of these, 450 were excluded after title and abstract screening, and 12 after full\u2010text 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\n                      <jats:styled-content style=\"fixed-case\">DMD<\/jats:styled-content>\n                      was frequently associated with impaired health\u2010related quality of life, poor sleep quality, reduced family function, depression, pain, stress, sexual dysfunction, and\/or lower self\u2010esteem, as well as a considerable impact on work life and productivity.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interpretation<\/jats:title>\n                    <jats:p>\n                      Providing informal care to a patient with\n                      <jats:styled-content style=\"fixed-case\">DMD<\/jats:styled-content>\n                      can be associated with a substantial burden. Yet, more research is needed to better understand the clinical implications of caregiving in\n                      <jats:styled-content style=\"fixed-case\">DMD<\/jats:styled-content>\n                      and the relationship between caregiver burden and the progression of the disease. Our data synthesis should be helpful in informing clinical and social support programmes directed to families caring for a patient with\n                      <jats:styled-content style=\"fixed-case\">DMD<\/jats:styled-content>\n                      .\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>What this paper adds<\/jats:title>\n                    <jats:p>\n                      <jats:list list-type=\"bullet\">\n                        <jats:list-item>\n                          <jats:p>A substantial body of evidence describes caregiver burden in Duchenne muscular dystrophy.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Little is known of the family burden beyond caregivers\u2019 self\u2010assessments.<\/jats:p>\n                        <\/jats:list-item>\n                      <\/jats:list>\n                    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