Mortality, health, social and economic consequences of amyotrophic lateral sclerosis: a controlled national study
Mortality, health, social and economic consequences of amyotrophic lateral sclerosis: a controlled national study
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DOI：
10.1007/s00415-012-6706-0
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发表时间：
2013-03-01
影响因子：
6
通讯作者：
Kjellberg, Jakob
中科院分区：
文献类型：
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作者：
Jennum, Poul;Ibsen, Rikke;Kjellberg, Jakob
肌萎缩侧索硬化症（Amyotrophiclateralsclerosis，ALS）是一种致死性神经退行性疾病，给患者、患者家庭和社会带来巨大负担。然而，我们缺乏关于国家一级总疾病负担的信息，特别是关于诊断前后的费用以及对配偶的后果。我们的目的是在一个国家样本中估计ALS的实际直接和间接成本。使用丹麦国家患者登记处（1998-2009）的记录，确定了2，394名ALS患者，随后与9，575名随机选择的年龄，性别和地理区域/民事状况匹配的对照受试者进行比较。直接费用，包括初级和部门接触和程序的频率，以及初级和二级部门的药物，从丹麦卫生部、丹麦药品局和国家卫生安全局获得。间接成本包括劳动力供应和社会转移支付，并以来自连贯社会统计的收入数据为依据。被诊断为ALS的患者生存率很低。平均（95%CI）5年生存率为0.278（0.358-0.298），对照组为0.865（0.858-0.872）. ALS患者与健康相关的接触和药物使用率显着较高，社会经济成本较高。他们的就业率也很低，而那些就业的人的收入水平低于对照组。每名ALS患者的年平均超额健康相关费用为a，而不是18,918。然而，配偶没有表现出过度的健康使用;事实上，他们的就业率和收入率更高，净成本减少了-a，而不是符号3，420。我们的结论是，ALS有严重的死亡率，健康和社会经济后果的患者。然而，对配偶的影响是复杂的;他们倾向于通过增加ALS诊断后的净收入来补偿对患者的社会影响。
Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that imposes a great burden on the patient, the patient's family and society. However, we lack information about the total disease burden at a national level, especially regarding costs before and after diagnosis and the consequences for spouses. We aimed to estimate the factual direct and indirect costs of ALS in a national sample. Using records from the Danish National Patient Registry (1998-2009), 2,394 patients with ALS were identified and subsequently compared with 9,575 randomly chosen control subjects matched for age, gender and geographic area/civil status. Direct costs, including frequencies of primary and sector contacts and procedures, and medication from primary and secondary sectors, were obtained from the Danish Ministry of Health, the Danish Medicines Agency, and the National Health Security. Indirect costs included labour supply and social transfer payments, and were based on income data derived from Coherent Social Statistics. Patients with a diagnosis of ALS had poor survival. The average (95 % CI) 5-year survival rate was 0.278 (0.358-0.298) compared with 0.865 (0.858-0.872) among controls. Patients with ALS had significantly higher rates of health-related contact and medication use and higher socioeconomic costs. They also had very low employment rates, while those in employment had a lower income level than control subjects. The annual mean excess health-related cost was a,not sign18,918 for each ALS patient. However, spouses showed no excess health usage; in fact, their employment and income rates were higher, and the net cost was reduced by -a,not sign3,420. We conclude that ALS has serious mortality, health and socioeconomic consequences for patients. However, the consequences for spouses are complex; they tend to compensate for the social consequences to patients by increasing their net income after ALS diagnosis.