Survey for assessing how Duchenne muscular dystrophy is explained to children with the disorder

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.