Darbà Josep, Marsà Alicia
Department of Economics, Universitat de Barcelona, Barcelona, Spain
Department of Health Economics, BCN Health Economics & Outcomes Research SL, Barcelona, Spain.
BMJ Open. 2019 Nov 21;9(11):e031271. doi: 10.1136/bmjopen-2019-031271.
To analyse the characteristics of patients diagnosed with spinal muscular atrophy in Spain, and to revise data on disease management and use of resources in both public and private healthcare centres.
A retrospective multicentre database analysis.
870 admission records registered between 1997 and 2015 with a diagnosis of spinal muscular atrophy were extracted from a Spanish claims database that includes hospital inpatient and outpatient admissions from 313 public and 192 private hospitals in Spain.
Admission files corresponded to 705 patients; 61.99% were males and 38.01% females. Average patient age was 37 years. Disease comorbidities registered during the admission consistently included hypertension, scoliosis and respiratory failures, all associated with the standard disease course. Regarding disease management at the hospital level, patients were mostly admitted through scheduled appointments (58.16%), followed by emergency admissions (41.72%), and into neurology services in 17% of the cases. Mean hospitalisation time was 10.45 days and in-hospital mortality reached 5.29%. The overall direct medical costs of spinal muscular atrophy were €291 525, excluding medication. The average annual cost per admission was €6274, with large variations likely to reflect disease complexity and that increases with length of stay.
The rarity of the disease difficulties the study of demographics and management; yet, an analysis of patient characteristics provides necessary information that can be used by governments to establish more efficient healthcare protocols. This study reflects the impact that individual needs and disease severity can have in disease burden calculations. Forthcoming decision-making policies should take into account medical costs and its variability, as well as pharmaceutical expenses and indirect costs. To our knowledge, this is the first study evaluating the use of healthcare resources of patients with spinal muscular atrophy in Spain.
分析西班牙确诊为脊髓性肌萎缩症患者的特征，并修订公立和私立医疗中心疾病管理及资源使用数据。
回顾性多中心数据库分析。
从西班牙一个理赔数据库中提取了1997年至2015年间登记的870份诊断为脊髓性肌萎缩症的入院记录，该数据库涵盖了西班牙313家公立医院和192家私立医院的住院和门诊入院情况。
入院档案对应705名患者；男性占61.99%，女性占38.01%。患者平均年龄为37岁。入院期间记录的疾病合并症始终包括高血压、脊柱侧弯和呼吸衰竭，所有这些都与标准病程相关。关于医院层面的疾病管理，患者大多通过预约入院（58.16%），其次是急诊入院（41.72%），17%的病例进入神经科服务。平均住院时间为10.45天，住院死亡率达5.29%。脊髓性肌萎缩症的总体直接医疗费用为291525欧元，不包括药物费用。每次入院的平均年度费用为6274欧元，差异较大，可能反映了疾病的复杂性，且随住院时间延长而增加。
该疾病的罕见性给人口统计学和管理研究带来困难；然而，对患者特征的分析提供了必要信息，可供政府用于制定更有效的医疗方案。本研究反映了个体需求和疾病严重程度对疾病负担计算的影响。即将出台的决策政策应考虑医疗费用及其变异性，以及药物费用和间接费用。据我们所知，这是西班牙第一项评估脊髓性肌萎缩症患者医疗资源使用情况的研究。
