Direct and indirect costs of systemic sclerosis and associated interstitial lung disease: A nationwide population‐based cohort study

Abstract

Background and objective The study aimed to evaluate the direct and indirect costs of systemic sclerosis (SSc) in cases with and without interstitial lung disease (ILD). Methods Cases diagnosed with SSc (2002–2015) were identified in the Danish National Patient Registry. Cases were matched 1:4 with non‐SSc controls from the general population. Data on costs were obtained from national databases. Excess cost was estimated as the annual cost per case subtracting the costs of the control. Results We identified 1869 cases and 7463 controls. Total excess cost (direct healthcare, elderly care and indirect costs) in the SSc‐ILD cohort was €29,725, and €17,905 in the non‐ILD SSc cohort. In‐ and out‐patient contacts and forgone earnings were the key drivers of costs in both cohorts. Healthcare costs were higher before and after the diagnosis compared with the controls. Men incurred higher excess healthcare costs than women. Hospitalization and outpatient services were the key drivers of the gender‐associated differences. Income from employment decreased more rapidly after diagnosis in the SSc‐ILD cohort than in the non‐ILD SSc cohort. Public transfer income increased after diagnosis, with the most pronounced difference in the SSc‐ILD cohort. Disability pension was the key driver of public transfer income. Conclusion SSc is associated with a significant individual and societal burden that is evident several years before and after the diagnosis. Total excess costs are higher in SSc‐ILD than in the non‐ILD SSc underlining the severity of pulmonary involvement. Initiatives to maintain work ability and to reduce hospital admissions may reduce the economic burden of SSc.

Recommendations from the Medical Education Editor

“…In the May edition of Respirology, Knarborg et al detail their data linkage analysis results using multiple Danish registries. 9 Using the Danish Civil Registration System number, they could access and link data from the Danish National Patient Registry, National Income Statistics Registry, Danish Register of Medicinal Product Statistics and National Health Service Register. Their cohort included 1869 SSc cases and 7463 matching controls, with 275 (14%) of their cohort having SSc-related ILD (SSc-ILD).…”

The hidden costs of living with systemic sclerosis‐associated interstitial lung disease

“…Nevertheless, the trends observed over the last 15 years suggest that healthcare and economic costs associated with SSc have increased worldwide. 3 To address some of these limitations, Knarborg et al 4 have undertaken an elegant study using data obtained from national Danish registries to provide a more accurate evaluation of the direct and indirect costs associated with SSc. This is a major strength of the study.…”

“…3 They noted that the excess costs for those with SSc-ILD were attributable to hospitalizations and continued to increase in the 3 years following diagnosis, which may reflect disease progression. 4 This is particularly relevant given that 30%-70% of patients develop ILD, which has a high morbidity and become the leading cause of death in SSc. 5 Interestingly, they also observe that healthcare costs are greatest for men, which the authors speculate is a consequence of more severe disease.…”

“…They suggest that the indirect economic burden is higher for those with SSc, in particular SSc-ILD, compared to the control population. 4,7 Making an accurate calculation of these indirect costs can be challenging. Using the National Income Statistics Registry, which holds information on income composition of the entire Danish population, Knarborg et al in a recent publication in Respirology identified that the indirect costs were primarily due to foregone earnings.…”

“…After diagnosis, income from employment declined fastest, whilst public transfer payments, including disability pension, increased the most for the SSc-ILD cohort. 4 Many of the reported healthcare and socioeconomic costs are attained around the time of diagnosis. However, it is becoming increasingly apparent that the use of healthcare resources can be greater prior to diagnosis.…”