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Long-term data from the Swiss pulmonary hypertension registry


Abstract

Background: Registries are important for real-life epidemiology on different pulmonary hypertension (PH) groups.
Objective: To provide long-term data of the Swiss PH-registry 1998-2012.
Methods: PH-patients were classified in 5 groups and registered upon written informed consent at 5 University- and 8 associated hospitals since 1998. NYHA, 6 minute walk distance, hemodynamics and therapy were registered at baseline. Patients were regularly followed and therapy and events (death, transplantation, endarterectomy or lost to follow-up) registered. The data was stratified according to the time of diagnosis into prevalent before 2000 and incident during 2000-04, 2005-08 and 2009-12.
Results: From 996 (53% female) PH-patients, 549 had pulmonary arterial hypertension (PAH), 36 PH due to left heart -, 127 due to lung disease, 249 chronic thromboembolic PH (CTEPH) and 35 miscellaneous PH. Age and BMI significantly increased over time whereas hemodynamic severity decreased. Overall, event-free survival was 84, 72, 64, 58% for the years 1-4 and similar for time periods since 2000, but better during the more recent periods for PAH and CTEPH. 89% of all PAH had target medical therapy, 43% combination-therapy. 14 resp. 2% of CTEPH underwent pulmonary endarterectomy or transplantation, 87 % were treated with PAH-target therapy.
Conclusion: Since 2000, incident Swiss PH-patients registered were older, hemodynamically better and mostly treated with PAH-target therapies. Survival was better for PAH and CTEPH diagnosed since 2008 compared with earlier diagnosis or other classifications.

Abstract

Background: Registries are important for real-life epidemiology on different pulmonary hypertension (PH) groups.
Objective: To provide long-term data of the Swiss PH-registry 1998-2012.
Methods: PH-patients were classified in 5 groups and registered upon written informed consent at 5 University- and 8 associated hospitals since 1998. NYHA, 6 minute walk distance, hemodynamics and therapy were registered at baseline. Patients were regularly followed and therapy and events (death, transplantation, endarterectomy or lost to follow-up) registered. The data was stratified according to the time of diagnosis into prevalent before 2000 and incident during 2000-04, 2005-08 and 2009-12.
Results: From 996 (53% female) PH-patients, 549 had pulmonary arterial hypertension (PAH), 36 PH due to left heart -, 127 due to lung disease, 249 chronic thromboembolic PH (CTEPH) and 35 miscellaneous PH. Age and BMI significantly increased over time whereas hemodynamic severity decreased. Overall, event-free survival was 84, 72, 64, 58% for the years 1-4 and similar for time periods since 2000, but better during the more recent periods for PAH and CTEPH. 89% of all PAH had target medical therapy, 43% combination-therapy. 14 resp. 2% of CTEPH underwent pulmonary endarterectomy or transplantation, 87 % were treated with PAH-target therapy.
Conclusion: Since 2000, incident Swiss PH-patients registered were older, hemodynamically better and mostly treated with PAH-target therapies. Survival was better for PAH and CTEPH diagnosed since 2008 compared with earlier diagnosis or other classifications.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Hospital Zurich > Clinic and Policlinic for Internal Medicine
04 Faculty of Medicine > University Hospital Zurich > Clinic for Pneumology
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:2015
Deposited On:01 Feb 2016 11:21
Last Modified:08 Dec 2017 10:17
Publisher:Karger
ISSN:0025-7931
Publisher DOI:https://doi.org/10.1159/000370125
PubMed ID:25661477

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