OBJECTIVES: To describe a retrospective real-world cohort study of pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) patients in Finland (FINPAH).

METHODS: All five Finnish university hospitals participated in the FINPAH. Patients with PAH/CTEPH-type diagnoses recorded in 2008–2019 were included; their characteristics, clinical information, and resource use were collected as a chart review by expert clinicians using electronic clinical research forms. Patients were followed until 2020-12-31. Mortality data were received from Statistics Finland.

The data permit was received from the Finnish Social and Health Data Permit Authority Findata. Data were checked, managed, analysed, visualised, and anonymised in a secure processing environment (SPE) before export outside of the SPE.

RESULTS: FINPAH covers baseline (N=627), mortality (N=613), and medication (N=609) data with a 4.5-year mean follow-up. Patients have PAH (N=360), CTEPH (N=216), or other PH type (N=51).

335 patients had incident (i.e., diagnosis after 2008-01-01) PAH, with the idiopathic (36.4%), connective (23.6%), and heart defect (22.1%) types being the most common. 203 patients had incident CTEPH.

The mean baseline age of incident PAH (CTEPH in parenthesis) patients was 54.0 (62.4) years, 72.8% (50.2%) were women, 27.1 (28.8) was mean body mass index, 44.5% (56.5%) were retired, 60.4% (56.3%) had never smoked, 7.3/30.0/51.7/11.0% (0.0/33.3/55.6/11.1%) had New York Heart Association (NYHA) class I/II/III/IV, and 32.4/60.6/7.0% (33.0/62.5/4.5%) had European Society of Cardiology (ESC) low/moderate/high risk, respectively. 95.1% of CTEPH patients had well-known CTEPH risk factors.

5-year survival was estimated at 92% for PAH and 83% for CTEPH, and 44% (34%) of PAH (CTEPH) patients were estimated to be free from the composite outcome of death or hospitalization due to PAH or CTEPH.

CONCLUSIONS: The FINPAH study register enables extensive analyses. Real world data studies are feasible and can provide important information for patients as well as healthcare and governmental decision makers.