Health care utilization and productivity loss associated with pulmonary arterial hypertension: a Swedish nationwide register study

Abstract

Abstract Background Pulmonary arterial hypertension (PAH) is a rare and serious disease with a significant impact on the quality of life and life expectancy. Purpose To estimate the health care resource utilization (HCRU) and productivity loss associated with PAH five years before and five years after diagnosis in a nationwide setting, compared to a matched control group. Methods This retrospective observational case-control study included adult patients diagnosed with PAH and registered in the Swedish PAH registry between January 1, 2008, through June 30, 2019. The control group consisted of five individuals per PAH patient matched on sex, birth year and municipality of residence at the time of PAH patients' diagnosis. The study was based on a dataset of individual level data compiled from several interlinked Swedish national registries. Mean (SD) HCRU (inpatient, outpatient, and drug utilization) and productivity loss (sick leave and disability benefits) were summarized for patients versus controls. Patients and controls with up to five years of follow-up data, i.e. alive and uncensored, were analyzed. Results In total 749 PAH patients were included in this study of which, 307 were censored and 234 died during the five-year follow-up period post diagnosis. The mean (SD) age of patients and controls were 61.8 (16.2) years and 64% were female. For the PAH group, the mean number of inpatient admissions and outpatient visits followed a similar trend, with an increase starting three years prior to diagnosis that peaked at the time of diagnosis (Figure 1). After diagnosis, mean inpatient admissions and outpatient visits decreased gradually. For the PAH group, drug utilization began to increase three years before diagnosis (Figure 1) and continued to increase after diagnosis. Controls showed much lower healthcare utilization compared to the PAH group. In a subgroup of the PAH group (work force participants only, n=449, Figure 1), the mean sick leave days per patient per year (PPPY) was three times higher for the PAH group compared to controls five years before diagnosis. On average, over the full ten-year period mean sick leave days was five times higher for PAH patients compared to controls. Mean disability pension days PPPY for the PAH group followed a similar trend as in- and outpatient utilization. This peaked around time of diagnosis and was eight times higher for the PAH group than controls. An estimation of the societal cost burden (Table 1) showed that the top cost drivers for the PAH group were drug use, disability pension and sick leave. Conclusions PAH is associated with a heavy economic burden on both the health care system and society, starting several years before time of diagnosis. Funding Acknowledgement Type of funding sources: Private company. Main funding source(s): Actelion Pharmaceuticals, a Janssen Pharmaceutical Company of Johnson & Johnson, Allschwil, Switzerland.