Bitencourt Fernanda Hendges de, Vieira Taiane Alves, Steiner Carlos Eduardo, Neto Jordão Correa, Boy Raquel, Schwartz Ida Vanessa Doederlein
Federal University of Rio Grande do Sul, Porto Alegre, Brazil; Health Technology Assessment for Clinical Genetics Group, Federal University of Rio Grande do Sul, Porto Alegre, Brazil.
Federal University of Rio Grande do Sul, Porto Alegre, Brazil; Bioethics Service, Hospital de Clínicas of Porto Alegre, Porto Alegre, Brazil.
Value Health Reg Issues. 2015 Dec;8:99-106. doi: 10.1016/j.vhri.2015.08.002. Epub 2015 Sep 29.
Mucopolysaccharidosis (MPS) type I (MPS I), MPS type II (MPS II), and MPS type VI (MPS VI) are lysosomal storage disorders for which enzyme replacement therapy (ERT) is available.
The objective of this study was to evaluate the frequency of medical interventions in a cohort of patients with MPS I, II, and VI on ERT to estimate the impact of direct medical costs associated with the treatment of MPS and compare its frequency with that observed among patients not on ERT.
This was a multicenter study using a retrospective design including a convenience sampling of Brazilian patients with MPS I, II, and VI. Data on the number and type of medical appointments, hospital admissions, medications used, and surgical procedures performed per patient were obtained through a review of medical records, as were data on ERT. These variables were then compared between patients undergoing ERT and those not on ERT.
Thirty-four patients (27 on ERT) were included in the study. Overall, between-group differences were found in median absolute frequencies of hospital admissions and surgical procedures per year, both of which were higher in the non-ERT group. Furthermore, we observed a high rate of failure to record medication dosage regimens.
Our findings suggest that Brazilian patients with MPS I, II, and VI who are on ERT undergo fewer medical interventions, which can lead to a reduction in direct medical costs to the publicly funded health care system. The cost of ERT, however, is extremely high and probably outweighs this reduction.
I型黏多糖贮积症(MPS I)、II型黏多糖贮积症(MPS II)和VI型黏多糖贮积症(MPS VI)是可采用酶替代疗法(ERT)的溶酶体贮积症。
本研究的目的是评估接受ERT治疗的MPS I、II和VI型患者队列中的医疗干预频率,以估计与MPS治疗相关的直接医疗费用的影响,并将其频率与未接受ERT治疗的患者中观察到的频率进行比较。
这是一项采用回顾性设计的多中心研究,包括对巴西MPS I、II和VI型患者的便利抽样。通过查阅病历获得每位患者的医疗预约次数和类型、住院次数、使用的药物以及进行的外科手术的数据,ERT数据也同样如此。然后对接受ERT治疗的患者和未接受ERT治疗的患者之间的这些变量进行比较。
34名患者(27名接受ERT治疗)纳入研究。总体而言,每年住院次数和外科手术的中位绝对频率在组间存在差异,两者在未接受ERT治疗的组中更高。此外,我们观察到药物剂量方案记录失败的发生率很高。
我们的研究结果表明,接受ERT治疗的巴西MPS I、II和VI型患者接受的医疗干预较少,这可能会降低公共资助医疗系统的直接医疗费用。然而,ERT的成本极高,可能超过了这种降低。