Direct Medical Costs of Spinal Muscular Atrophy in the Catalonia Region: A Population-Based Analysis
Direct Medical Costs of Spinal Muscular Atrophy in the Catalonia Region: A Population-Based Analysis
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DOI：
10.1007/s40261-020-00897-4
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发表时间：
2020-04-01
影响因子：
3.2
通讯作者：
Darba, Josep
中科院分区：
文献类型：
--
作者：
Darba, Josep
脊髓性肌萎缩症（SMA）是一种罕见的疾病，估计每10，000例活产就有1例发生。SMA患者通常需要密集的长期医疗保健，这意味着巨大的社会和经济成本。目的本研究旨在从加泰罗尼亚国家卫生系统的角度评估SMA的直接医疗成本，并为区域层面制定最佳疾病管理方案和资源分配决策提供区域数据。方法：一项回顾性的，以人群为基础的研究设计的基础上，从初级保健中心，医院和专业护理机构（住院和门诊护理），急诊服务和扩展护理设施从区域政府索赔数据库中获得的入院记录。结果396例患者符合纳入标准。考虑到各级医疗保健资源的使用情况，不包括处方药费用，每位病人每年的直接医疗费用共计58 606欧元。专科护理占主要与SMA呼吸系统表现相关的费用的81%。2016年，71.26%的SMA患者有4个或更多系统受到慢性疾病的影响，而一般人群中为23.50%，这对医疗保健使用产生了影响。结论：必须考虑SMA患者的住院延长治疗和多病慢性疾病的增加，以制定反映SMA复杂性的多学科治疗方案。未来的资源分配决策应反映SMA患者注册的专科治疗的强化使用。
Background Spinal muscular atrophy (SMA) is a rare disorder, estimated to affect 1 per 10,000 live births. Patients affected with SMA often require intensive, chronic healthcare, which represents great social and economic costs. Objective This study aimed to evaluate the direct medical costs of SMA, from the National Health System perspective in Catalonia, and provide regional data for the development of optimal disease management protocols and resource allocation decisions at the regional level. Methods A retrospective, population-based study was designed based on admission records from primary care centres, hospitals and specialised care settings (inpatient and outpatient care), emergency services and extended care facilities obtained from a regional governmental claims database. Results A total of 396 patients met the inclusion criteria. Annual direct medical costs summed euro58,606 per patient, taking into account the use of healthcare resources at all levels of care and excluding the cost of prescription medication. Specialised care represented 81% of the expenses that were mostly associated with respiratory manifestations of SMA. In the year 2016, 71.26% of patients with SMA had four or more systems affected by a chronic condition, versus 23.50% in the general population, which had an impact on healthcare use. Conclusions Inpatient extended care and the increased presence of multimorbid chronic conditions in patients with SMA must be taken into account in order to develop multidisciplinary treatment protocols that reflect the complexity of SMA. Forthcoming resource allocation decisions should reflect the intensive use of specialised care registered in patients with SMA.