title: An international physician survey of chronic thromboembolic pulmonary hypertension management.
abstract: We conducted an international study to evaluate practices in the diagnosis and management of patients with chronic thromboembolic pulmonary hypertension (CTEPH) globally across different regions. Between August and October 2012, CTEPH-treating physicians completed a 15-minute online questionnaire and provided patient record data for their 2-5 most recent patients with CTEPH. Overall, 496 physicians (Europe: 260; United States: 152; Argentina: 52; Japan: 32) completed the questionnaire and provided patient record data for 1,748 patients. The proportion of physicians who described themselves as working in or affiliated with a specialized pulmonary hypertension (PH) center ranged from 38% in France and Italy to 83% in the United States. A large proportion of patients did not undergo ventilation/perfusion scanning (46%-67%) or right heart catheterization (24%-57%) for the diagnosis of CTEPH. Referral rates for pulmonary endarterectomy evaluation ranged from 25% in Japan to 44% in Europe, with higher referral rates in PH centers; the main reasons for lack of referral were that surgery was not considered unless medical treatment was failing and patient refusal. Other variations in management included greater use of phosphodiesterase 5 inhibitors in the United States than in Europe and Japan and greater use of combination treatment in the United States than in Europe. Physicians' perceptions of their treatment strategy were generally consistent with patient record data. Results from this study, which includes a global aspect of CTEPH care, demonstrate not only regional differences in CTEPH management but, more importantly, considerable nonadherence to the diagnosis and treatment guidelines for CTEPH, even in PH centers.
authors.affiliation: University of Giessen and Marburg Lung Center (UGMLC), Giessen, member of the German Center of Lung Research (DZL), Giessen, Germany.
authors.forename: Henning
authors.initials: H
authors.lastname: Gall
authors.affiliation: Pulmonary Critical Care and Sleep Division, Tufts Medical Center, Tufts University School of Medicine, Boston, Massachusetts, USA.
authors.forename: Ioana R
authors.initials: IR
authors.lastname: Preston
authors.affiliation: Global Market Research, Bayer Pharma, Berlin, Germany.
authors.forename: Barbara
authors.initials: B
authors.lastname: Hinzmann
authors.affiliation: Ipsos Healthcare, London, United Kingdom.
authors.forename: Sabina
authors.initials: S
authors.lastname: Heinz
authors.affiliation: National Pulmonary Endarterectomy Service, Department of Cardiothoracic Surgery, Papworth Hospital, Cambridge, United Kingdom.
authors.forename: David
authors.initials: D
authors.lastname: Jenkins
authors.affiliation: Division of Pulmonary and Critical Care Medicine, University of California, San Diego, La Jolla, California, USA.
authors.forename: Nick H
authors.initials: NH
authors.lastname: Kim
authors.affiliation: Allgemeines Krankenhaus der Stadt Wien, Vienna, Austria.
authors.forename: Irene
authors.initials: I
authors.lastname: Lang
keywords: chronic thromboembolic pulmonary hypertension; clinical practice; diagnosis; guidelines; pulmonary arterial hypertension–specific therapies