title: Truths and misinformation: a qualitative exploration of myotonic dystrophy.
abstract: BACKGROUND
  Myotonic dystrophy (DM1) is an autosomal dominant, progressive, and multisystem condition that impacts affected individuals physically, socially, and emotionally. Understanding individuals' perceptions of their disease is critical to ensuring appropriate information, education, and counseling.
  
  
  METHODS
  We conducted a content analysis of findings from a larger study that used a novel, qualitative research approach called photovoice to explore nine patients' experiences of living with DM1. Participants took pictures that illustrated barriers or facilitators to living with DM1; their photographs then formed the basis of semistructured interviews. Transcripts were analyzed and, among themes, we identified one titled "DM1 truths and misinformation" that described participants' disease knowledge. Analysis revealed four categories within this broader theme: "the physical and emotional cost of DM1," "managing my DM1," "genetics and me" and "patients as advocates and educators."
  
  
  RESULTS
  Findings showed that DM1 participants had good core knowledge with respect to their disease and its implications. However, each participant held as fact fragments of misinformation that shaped decision-making and pointed to a clear need for strategies to mitigate variable interpretation of health information.
  
  
  CONCLUSIONS
  We conclude that there is a need for increased education and awareness about symptoms, genetic information and treatment strategies for patients, their family members, and health care providers.
authors: 1Health & Rehabilitation Sciences,Western University,Elborn College,London,ONCanada.
authors: Kori A
authors: KA
authors: LaDonna
authors: 2Department of Medicine,University of Toronto,Consultant,Credit Valley Hospital,Mississauga,ON,Canada.
authors: Amer A
authors: AA
authors: Ghavanini
authors: 3Department of Clinical Neurological Sciences,Western University,University Hospital,LHSC,London,ON,Canada.
authors: Shannon L
authors: SL
authors: Venance
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D017668:Age of Onset; D003142:Communication; D017281:Cost of Illness; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D009223:Myotonic Dystrophy / Q000235:genetics / Q000523:psychology / Q000628:therapy; D010344:Patient Advocacy; D010353:Patient Education as Topic; D036301:Qualitative Research; D011788:Quality of Life; D014831:Voice; D055815:Young Adult
keywords: qualitative research