Patients with CTEPH have poor health-related quality of life (HRQoL). In a prospective, large-scale, international European registry, 3-year survival was estimated at 89% in patients with newly diagnosed CTEPH who underwent pulmonary endarterectomy (PEA) surgery and 70% in those who did not. A recent systematic literature review of CTEPH epidemiology suggested an incidence in adults of 3.1 to 6.0 per million and a prevalence of 25.8 to 38.4 per million. The PAH-SYMPACT™ appears to be fit for purpose for assessing disease status in patients with CTEPH.Ĭhronic thromboembolic pulmonary hypertension (CTEPH) is a form of pulmonary hypertension (PH) characterized by small vessel arteriopathy and fibro-thrombotic obstructions of large pulmonary arteries. The symptoms and impacts experienced by patients with CTEPH align with items included in the PAH-SYMPACT™. Overall, the instructions, items, and response options of the PAH-SYMPACT™ were clear and easy to understand. All participants indicated that no important CTEPH symptoms were missing from the PAH-SYMPACT™. ![]() The PAH-SYMPACT™ items were relevant to most participants and reflected their experience of CTEPH. All participants identified shortness of breath as an “extremely important” symptom, and seven participants rated fatigue as “extremely important.” The most frequent impacts of CTEPH were on ability to walk quickly (endorsed by all 12 participants), ability to walk up inclines or stairs (11 participants), and ability to carry things (11 participants). The most frequently endorsed symptoms were shortness of breath (endorsed by all 12 participants), fatigue (11 participants), and lightheadedness (10 participants). Two thirds were female and most (83%) had undergone pulmonary endarterectomy and/or balloon pulmonary angioplasty. Participants ( N = 12) had a mean age of 62.5 years. They also provided feedback on the comprehensibility and relevance of the PAH-SYMPACT™‘s instructions, items, and response options. They described their experience of CTEPH symptoms and the impact these symptoms have on their lives. MethodsĪdults diagnosed with CTEPH, recruited from two clinical sites in the US, participated in one-to-one qualitative telephone interviews. This qualitative study aimed to better understand the symptoms of CTEPH and how they affect patients’ lives, as well as to determine the appropriateness of the Pulmonary Arterial Hypertension – Symptoms and Impact (PAH-SYMPACT™) questionnaire for use in this patient population. However, a better understanding of how CTEPH symptoms affect patients’ lives is needed to optimally assess the impact of the disease and treatment. ![]() Health-related quality of life is often significantly impaired in patients with CTEPH. ![]() Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare form of pulmonary hypertension caused by blood clots and scar tissue in the blood vessels of the lungs.
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