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Management and current status of spinal muscular atrophy: a retrospective multicentre claims database analysis.
Orphanet Journal of Rare Diseases ( IF 3.7 ) Pub Date : 2020-01-10 , DOI: 10.1186/s13023-019-1287-y
Josep Darbà 1
Affiliation  

INTRODUCTION The interest in patient demographics and disease management has increased in the past years due to their utility in developing measures that allow healthcare providers to reflect disease complexity. OBJECTIVE To revise the current status of spinal muscular atrophy in the region of Catalonia, and to validate the utility of the database for this aim. METHODS Five hundred twenty-four patients diagnosed with a spinal muscular atrophy were identified in the region of Catalonia via the novel program of data analysis for research and innovation in health (PADRIS). Patient records included in the analysis corresponded to primary care, hospital, emergency room, extended care and mental health admissions between 2007 and 2017. RESULTS 58.02% of patients with a SMA diagnosis were males while 40.84% were females. Average age of diagnosis was 38.31 ± 24.49 years ±SD. Significantly lower was the age of diagnosis of spinal muscular atrophy type I, 1.81 ± 3.01 years. An average of 22 patients died per year during the study period, with a mean decease age of 62.96 ± 25.41 years. Patients were generally attended in hospitals, and the use of healthcare resources was focused on resolving respiratory issues and scoliosis. The highest ratio of admissions per patient was registered in those aged 0 to 4 years. Patients presented a higher risk than the general population and a higher frequency of multimorbidites. CONCLUSIONS Patients exhibited similar characteristics to prior European studies. Multiple admissions in younger patients, mostly due to respiratory issues, have a central role in increasing medical costs of SMA. Equally, the higher risk of patients and increased number of multimorbidity groups translate in an elevated number of admissions in health centres and ER, deriving in higher expenses.

中文翻译:

脊髓性肌萎缩症的管理和现状:回顾性多中心索赔数据库分析。

引言近年来,由于患者人口统计和疾病管理在开发使医疗保健提供者反映疾病复杂性的措施方面的效用,引起了人们的兴趣。目的修改加泰罗尼亚地区脊柱肌肉萎缩症的现状,并验证该数据库在该目标中的实用性。方法通过新颖的数据分析程序,在健康和医疗领域进行研究和创新,确定了加泰罗尼亚地区的254名确诊为脊髓性肌萎缩的患者。分析中包含的患者记录对应于2007年至2017年之间的初级保健,医院,急诊室,扩展护理和心理健康入院。结果SMA诊断的患者中58.02%为男性,而女性为40.84%。平均诊断年龄为38.31±24.49岁±SD。诊断为I型脊髓性肌萎缩的年龄显着降低,为1.81±3.01岁。在研究期间,每年平均有22名患者死亡,平均死亡年龄为62.96±25.41岁。患者通常在医院就诊,医疗资源的使用重点在于解决呼吸问题和脊柱侧弯。0至4岁年龄段的患者入院率最高。与一般人群相比,患者出现更高的风险,多发病率也更高。结论患者表现出与以前的欧洲研究相似的特征。年轻患者的多次入院,主要是由于呼吸系统疾病,在增加SMA的医疗费用中起着核心作用。一样,
更新日期:2020-01-11
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