Pulmonary Arterial Hypertension (PAH) and Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Patients in Finland (FINPAH) – A Descriptive Retrospective Real World Cohort Study Between 2008 and 2020
Pentikäinen M1, Soini E2, Asseburg C3, Mankinen P3, Wennerström C4, Puhakka A4, on Behalf of the FINPAH-Study Group *5
1Helsinki University Hospital and University of Helsinki, Helsinki, Finland, 2ESiOR Oy, Kuopio, 15, Finland, 3ESiOR Oy, Kuopio, Finland, 4Janssen-Cilag Oy, Espoo, Finland, 5University Hospitals, Helsinki, Kuopio, Oulu, Tampere, and Turku, Finland
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.
Conference/Value in Health Info
Value in Health, Volume 25, Issue 12S (December 2022)
Clinical Outcomes, Epidemiology & Public Health, Study Approaches
Clinical Outcomes Assessment, Clinician Reported Outcomes, Disease Classification & Coding, Registries
SDC: Cardiovascular Disorders (including MI, Stroke, Circulatory), SDC: Rare & Orphan Diseases, SDC: Respiratory-Related Disorders (Allergy, Asthma, Smoking, Other Respiratory)