PDF(Pubmed)
Abstract：
Systemic sclerosis (SSc) is a rare chronic autoimmune disease characterised by microvascular damage, immune dysregulation and fibrosis, affecting the skin, joints and internal organs. Interstitial lung disease (ILD) is frequently associated with systemic sclerosis (SSc-ILD), leading to a poor prognosis and a high mortality rate. The aim of the BUILDup study (BUrden of Interstitial Lung Disease Consensus Panel) was to investigate the overall disease management and to estimate the social and economic burden of SSc-ILD across 8 European countries.
A modified Delphi method was used to obtain information on the management of SSc-ILD patients among 40 specialists (panellists) from 8 European countries. Average annual costs per patient and country were estimated by means of a direct cost-analysis study.
The panellists had managed 805 SSc-ILD patients in the last year, 39.1% with limited (L-SSc-ILD) and 60.9% with extensive (E-SSc-ILD) disease. Of these, 32.8% of the panellists started treatment at diagnosis, 42.3% after signs of deterioration/progression and 24.7% when the disease had become extensive. The average annual cost of SSc-ILD per patient ranged from €6191 in Greece to €25,354 in Sweden. Main cost drivers were follow-up procedures, accounting for 80% of the total annual costs. Hospitalisations were the most important cost driver of follow-up costs. Healthcare resource use was more important for E-SSc-ILD compared to L-SSc-ILD. Early retirement was taken by 40.4% of the patients with an average of 11.9 years before the statutory retirement age.
SSc-ILD entails not only a clinical but also a social and economic burden, and is higher for E-SSc-ILD.
A modified Delphi method was used to obtain information on the management of SSc-ILD patients among 40 specialists (panellists) from 8 European countries. Average annual costs per patient and country were estimated by means of a direct cost-analysis study.
The panellists had managed 805 SSc-ILD patients in the last year, 39.1% with limited (L-SSc-ILD) and 60.9% with extensive (E-SSc-ILD) disease. Of these, 32.8% of the panellists started treatment at diagnosis, 42.3% after signs of deterioration/progression and 24.7% when the disease had become extensive. The average annual cost of SSc-ILD per patient ranged from €6191 in Greece to €25,354 in Sweden. Main cost drivers were follow-up procedures, accounting for 80% of the total annual costs. Hospitalisations were the most important cost driver of follow-up costs. Healthcare resource use was more important for E-SSc-ILD compared to L-SSc-ILD. Early retirement was taken by 40.4% of the patients with an average of 11.9 years before the statutory retirement age.
SSc-ILD entails not only a clinical but also a social and economic burden, and is higher for E-SSc-ILD.
摘要：
系统性硬化症（SSc）是一种罕见的以微血管损伤为特征的慢性自身免疫性疾病，免疫失调和纤维化，影响皮肤，关节和内脏。间质性肺病（ILD）通常与系统性硬化症（SSc-ILD）相关，导致不良预后和高死亡率。BUILDup研究（BUrden间质性肺病共识小组）的目的是调查整体疾病管理，并估计8个欧洲国家SSc-ILD的社会和经济负担。
使用改进的Delphi方法从来自8个欧洲国家的40名专家（小组成员）中获取有关SSc-ILD患者管理的信息。通过直接成本分析研究估算了每个患者和国家的平均年度成本。
小组成员去年管理了805名SSc-ILD患者，39.1%患有局限性（L-SSc-ILD），60.9%患有广泛性（E-SSc-ILD）疾病。其中,32.8%的小组成员在诊断时开始治疗,在恶化/进展迹象后为42.3％，当疾病变得广泛时为24.7％。每位患者的SSc-ILD的平均年费用从希腊的6191欧元到瑞典的25,354欧元不等。主要成本驱动因素是后续程序，占年度总成本的80%。住院是随访成本的最重要成本驱动因素。与L-SSc-ILD相比，医疗保健资源的使用对E-SSc-ILD更为重要。40.4％的患者在法定退休年龄之前平均为11.9岁，提前退休。
SSc-ILD不仅带来临床负担，而且带来社会和经济负担，并且对于E-SSc-ILD较高。
使用改进的Delphi方法从来自8个欧洲国家的40名专家（小组成员）中获取有关SSc-ILD患者管理的信息。通过直接成本分析研究估算了每个患者和国家的平均年度成本。
小组成员去年管理了805名SSc-ILD患者，39.1%患有局限性（L-SSc-ILD），60.9%患有广泛性（E-SSc-ILD）疾病。其中,32.8%的小组成员在诊断时开始治疗,在恶化/进展迹象后为42.3％，当疾病变得广泛时为24.7％。每位患者的SSc-ILD的平均年费用从希腊的6191欧元到瑞典的25,354欧元不等。主要成本驱动因素是后续程序，占年度总成本的80%。住院是随访成本的最重要成本驱动因素。与L-SSc-ILD相比，医疗保健资源的使用对E-SSc-ILD更为重要。40.4％的患者在法定退休年龄之前平均为11.9岁，提前退休。
SSc-ILD不仅带来临床负担，而且带来社会和经济负担，并且对于E-SSc-ILD较高。
