Abstract
Children affected by myotonic dystrophy show a high incidence of psychomotor retardation. Particularly, in congenital myotonic dystrophy (CDM), almost all patients' lifelong mental/motor development tends to be generally lower than normal. As 95% of mothers of children with CDM are also DM1 patients, they often have difficulty raising children because of their own symptoms. To ascertain a true picture of patients' needs that are connected to children's health resources, education, and social support, we conducted a questionnaire survey for caregivers of children with CDM/childhood-onset myotonic dystrophy (DM). We recruited participants within the patient-family myotonic dystrophy association in Japan and 28 caregivers joined this survey with participation consent. We performed a post-description questionnaire. We received 25 families' responses (with a collection rate of 96%) including 28 patients. Twenty-three patients had CDM and 5 patients had the childhood-onset form. The patients' median age at the time of this survey was 6 years (ranging from 1 to 39 years old). Before school age, 26 patients attended a rehabilitation center, and 9 of them also entered nursery school or kindergarten. With advancing age, the rates of choosing special educational support schools increased. Five patients received home medical/health services through social support, such as rehabilitation and nursing. Some caregivers needed help for themselves due to their own fatigability and anxiety. Through this survey, the most important point for caregivers was found to be encouraging patients' development. According to the free description, many caregivers thought that social support for medical care services was insufficient. We detected caregivers' actual demands regarding raising children with CDM/childhood-onset DM in Japan. It was fruitful information for providing caregivers with proper advice at a time when they really need it.
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