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Participants reported the prevalence and importance of each theme affecting their lives. Surveys from participants were matched with surveys from their caregivers for additional analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The most prevalent symptomatic themes included problems with hands or fingers (79%) and gastrointestinal issues (75%). Problems with urinary\/bowel control and gastrointestinal issues were reported to have the greatest impact on patients\u2019 lives. Responses from participants and their caregivers had varying levels of agreement among symptomatic themes.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>Many symptoms have meaningful impact on disease burden. The highest levels of agreement between caregivers and individuals with pediatric forms of myotonic dystrophy were found for physical activity themes.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.26632","type":"journal-article","created":{"date-parts":[[2019,7,12]],"date-time":"2019-07-12T15:44:06Z","timestamp":1562946246000},"page":"392-399","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Patient\u2010reported study of the impact of pediatric\u2010onset myotonic dystrophy"],"prefix":"10.1002","volume":"60","author":[{"given":"Michael","family":"Hunter","sequence":"first","affiliation":[{"name":"Department of Neurology University of Utah School of Medicine  Salt Lake City Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne\u2010Berit","family":"Ekstrom","sequence":"additional","affiliation":[{"name":"Regional Pediatric Rehabilitation Center Queen Silvia Children's Hospital  Gothenburg 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