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本邦の筋ジストロフィー医療は,専門医療機関による集学的医療で発展し,生命予後の著しい延長をもたらした。患者の生活の場は施設から地域へ移行し,受診機関も多様化した。筋ジストロフィー患者は神経発達症候群など中枢神経障害を抱えることも多く,移行医療の時期は身体的・精神的に不安定なことが多いため,早期からリハビリテーションなどで専門機関の受診機会を持つ,一定の併診期間を設定するなどの工夫が望ましい。
Abstract
In Japan, medical care for patients with muscular dystrophy has improved through multidisciplinary care provided by specialized institutions, resulting in a marked increase in life expectancy. Today, most patients with muscular dystrophy live in their own homes and receive medical care in various non-specialized institutions. Some muscular dystrophy patients have associated central nervous system disorders, which include neurodevelopmental syndromes. In addition, many patients are physically and mentally unstable during adolescence, when the transition from pediatric neurology to adult neurology occurs. Early opportunities to consult specialized institutions for rehabilitation or specific periods when pediatric and adult neurologists take care of patients together should be considered to facilitate this transition more easily.
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