title: [Survey for assessing how Duchenne muscular dystrophy is explained to children with the disorder].
abstract: OBJECTIVE
  There are many difficulties in disclosing Duchenne muscular dystrophy (DMD) to children with the disorder. The purpose of this study was to assess the explanation of DMD given to affected children by child neurologist.
  
  
  METHODS
  The questionnaire was mailed to board-certified child neurologists of the Japanese Society of Child Neurology. The questionnaire consisted of questions on how physicians explained the condition to children with DMD (their patterns of explanation) and their attitude towards the children while explaining the disease.
  
  
  RESULTS
  We received 311 replies. The contents of physicians' explanations were categorized and correspondence analysis revealed medical support" (explanation about the symptoms, prognosis, medical responses) and "humanistic support" (telling purpose in life, patient group introduction). Parents' understanding of the disease, acceptance, and trust relationships were considered important factors for disease explanation by the physicians. Physicians agreed with the need of clinical psychologist and other psychological professionals when they tell their diagnosis, and agreed with telling the diagnosis to a DMD child reached a certain age.
  
  
  CONCLUSIONS
  It was revealed that physicians' explanation were largely categorized into two groups, and the important factors for disease explanation and physicians' attitudes towards disclosure of the diagnosis. This information will help in explaining the disease to children with DMD.
authors.affiliation: Graduate School of Human Sciences, Osaka University, Suita, Osaka.
authors.forename: Haruo
authors.initials: H
authors.lastname: Fujino
authors.forename: Toshio
authors.initials: T
authors.lastname: Saito
authors.forename: Osamu
authors.initials: O
authors.lastname: Imura
authors.forename: Tsuyoshi
authors.initials: T
authors.lastname: Matsumura
authors.forename: Susumu
authors.initials: S
authors.lastname: Shinno
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D002648:Child; D030881:Disclosure / Q000706:statistics & numerical data; D006801:Humans; D008875:Middle Aged; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology*; D010820:Physicians; D011795:Surveys and Questionnaires