PDF(Pubmed)
Abstract：
UNASSIGNED: Duchenne Muscular Dystrophy (DMD) is a progressive genetic disease with a prevalence of 1 per 3,600-6,000 male births. Individuals with DMD are typically diagnosed at age 4-7 years; median survival is 30 years. They require multidisciplinary care, personal assistance, and often special education.
UNASSIGNED: The aim was to assess the burden of disease in DMD in Denmark. This includes incidence, prevalence, use of healthcare services, labour market participation, educational outcomes, and overall attributable costs due to DMD. Impact on the closest relatives (siblings and parents) was also investigated.
UNASSIGNED: The comprehensive Danish national health and administrative registers were used to assess the burden of disease following individuals with DMD and closest relatives from five years before, and up to 20 years after DMD diagnosis. Individuals with DMD (and relatives) from 1994-2021 were included. All outcomes were compared to matched control groups without the disease drawn from the Danish population.
UNASSIGNED: 213 unique individuals with DMD were identified. They had lower grades in school, required more special education and more healthcare and home care compared to their control group. The extra costs of special education summed to EUR 180,900 over the course of 11 years elementary school. They had an annual average productivity loss of EUR 20,200 between the age of 18 to 30. The extra healthcare costs of DMD in the 20 years after diagnosis were estimated to EUR 1,524,000. If an individual with DMD lives to be 30, total extra costs sum to EUR 2,365,800.
UNASSIGNED: Using national register data this study presented detailed results on the burden of disease of DMD, including impact on closest relatives. With 60 additional hospital admissions and 200 extra outpatient contacts in 20 years healthcare costs, but also costs of home care and special education, increases as disease progresses.
UNASSIGNED: The aim was to assess the burden of disease in DMD in Denmark. This includes incidence, prevalence, use of healthcare services, labour market participation, educational outcomes, and overall attributable costs due to DMD. Impact on the closest relatives (siblings and parents) was also investigated.
UNASSIGNED: The comprehensive Danish national health and administrative registers were used to assess the burden of disease following individuals with DMD and closest relatives from five years before, and up to 20 years after DMD diagnosis. Individuals with DMD (and relatives) from 1994-2021 were included. All outcomes were compared to matched control groups without the disease drawn from the Danish population.
UNASSIGNED: 213 unique individuals with DMD were identified. They had lower grades in school, required more special education and more healthcare and home care compared to their control group. The extra costs of special education summed to EUR 180,900 over the course of 11 years elementary school. They had an annual average productivity loss of EUR 20,200 between the age of 18 to 30. The extra healthcare costs of DMD in the 20 years after diagnosis were estimated to EUR 1,524,000. If an individual with DMD lives to be 30, total extra costs sum to EUR 2,365,800.
UNASSIGNED: Using national register data this study presented detailed results on the burden of disease of DMD, including impact on closest relatives. With 60 additional hospital admissions and 200 extra outpatient contacts in 20 years healthcare costs, but also costs of home care and special education, increases as disease progresses.
摘要：
背景：杜兴氏肌营养不良症（DMD）是一种进行性遗传性疾病，患病率为每3,600-6,000名男性出生1名。患有DMD的个体通常在4-7岁时被诊断;中位生存期为30年。它们需要多学科护理，个人援助,往往是特殊教育。
目的：目的是评估丹麦DMD的疾病负担。这包括发病率，患病率,使用医疗保健服务，劳动力市场参与，教育成果,以及由于DMD引起的总体可占成本。还调查了对最近的亲戚（兄弟姐妹和父母）的影响。
方法：使用全面的丹麦国家卫生和行政登记册来评估患有DMD的个体和五年前的近亲的疾病负担，在DMD诊断后长达20年。包括1994-2021年患有DMD的个人（和亲戚）。将所有结果与来自丹麦人群的没有疾病的匹配对照组进行比较。
结果：确定了213名DMD患者。他们在学校的成绩较低，与对照组相比，他们需要更多的特殊教育，更多的医疗保健和家庭护理。在11年的小学期间，特殊教育的额外费用总计为180,900欧元。他们在18至30岁之间的年平均生产力损失为20,200欧元。DMD诊断后20年的额外医疗费用估计为1,524,000欧元。如果患有DMD的人活到30岁，额外费用总额为2,365,800欧元。
结论：使用国家注册数据，这项研究提供了关于DMD疾病负担的详细结果，包括对近亲的影响。在20年的医疗费用中，增加了60次住院和200次门诊接触，还有家庭护理和特殊教育的费用，随着疾病的进展而增加。
目的：目的是评估丹麦DMD的疾病负担。这包括发病率，患病率,使用医疗保健服务，劳动力市场参与，教育成果,以及由于DMD引起的总体可占成本。还调查了对最近的亲戚（兄弟姐妹和父母）的影响。
方法：使用全面的丹麦国家卫生和行政登记册来评估患有DMD的个体和五年前的近亲的疾病负担，在DMD诊断后长达20年。包括1994-2021年患有DMD的个人（和亲戚）。将所有结果与来自丹麦人群的没有疾病的匹配对照组进行比较。
结果：确定了213名DMD患者。他们在学校的成绩较低，与对照组相比，他们需要更多的特殊教育，更多的医疗保健和家庭护理。在11年的小学期间，特殊教育的额外费用总计为180,900欧元。他们在18至30岁之间的年平均生产力损失为20,200欧元。DMD诊断后20年的额外医疗费用估计为1,524,000欧元。如果患有DMD的人活到30岁，额外费用总额为2,365,800欧元。
结论：使用国家注册数据，这项研究提供了关于DMD疾病负担的详细结果，包括对近亲的影响。在20年的医疗费用中，增加了60次住院和200次门诊接触，还有家庭护理和特殊教育的费用，随着疾病的进展而增加。
