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Introduction <p>Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare, progressive pulmonary hypertension characterized by chronic fibrotic thrombi. Treatment includes surgical, endovascular, and pharmaceutical options. With varied treatments, it is essential to understand how they are deployed across real-world settings. We aimed to describe clinical characteristics, treatment patterns, and quality of life across real-world settings in the USA.</p> Methods <p>Data were drawn from the Adelphi Real World CTEPH Disease Specific Program™, a cross-sectional survey of US physicians and patients, conducted September 2023–May 2024. Physicians recruited by local fieldwork agents using a short screening questionnaire provided demographics, clinical characteristics, and treatment patterns for 1–6 consecutively consulting patients with right heart catheterization confirmed CTEPH. These patients self-completed a form containing the EQ-5D-5L, visual analog scale (EQ-VAS), workplace and activity impairment scale (WPAI), pulmonary arterial hypertension symptom and impact scale. Data were stratified by treatment setting (accredited or nonaccredited pulmonary hypertension center). Analyses were descriptive.</p> Results <p>In total, 98 physicians provided data on 153 patients, of whom 53 completed the patient self-complete form. Mean (standard deviation) patient age was 59.2 years, 59.5% female, and 73.2% considered operable. Of those who had undergone a surgery/procedure (<i>n</i> = 68), 82.1% had undergone pulmonary thromboendarterectomy (PTE), and 19.1% balloon pulmonary angioplasty (BPA). Overall, 82.4% were prescribed any pharmaceutical medication for their CTEPH; of those treated, 81.0% were prescribed anticoagulants. Monotherapy (45.7%) was the most reported regimen in nonaccredited settings; for accredited settings, this was dual therapy (45.5%). EQ-5D-5L scores were low with nearly a quarter of patients reporting problems with usual activities and mobility, and 26.4% needing to change work patterns.</p> Conclusions <p>Though treatment patterns generally followed guidelines, BPA was potentially underutilized. Dyspnea was common, despite treatment, with patients experiencing reduced quality of life, highlighting an unmet need.</p>

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Real-World Treatment Patterns and Burden of Chronic Thromboembolic Pulmonary Hypertension Patients across Consultation Settings in the USA

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2025年12月18日

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  • Belinda Rivera-Lebron,
  • Alison Witkin,
  • Carly J. Paoli,
  • Mark Small,
  • Mia Harvey,
  • Daniel Graham,
  • Sumeet Panjabi,
  • Gabriela Gomez Rendon,
  • Josanna Rodriguez-Lopez

摘要

Introduction

Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare, progressive pulmonary hypertension characterized by chronic fibrotic thrombi. Treatment includes surgical, endovascular, and pharmaceutical options. With varied treatments, it is essential to understand how they are deployed across real-world settings. We aimed to describe clinical characteristics, treatment patterns, and quality of life across real-world settings in the USA.

Methods

Data were drawn from the Adelphi Real World CTEPH Disease Specific Program™, a cross-sectional survey of US physicians and patients, conducted September 2023–May 2024. Physicians recruited by local fieldwork agents using a short screening questionnaire provided demographics, clinical characteristics, and treatment patterns for 1–6 consecutively consulting patients with right heart catheterization confirmed CTEPH. These patients self-completed a form containing the EQ-5D-5L, visual analog scale (EQ-VAS), workplace and activity impairment scale (WPAI), pulmonary arterial hypertension symptom and impact scale. Data were stratified by treatment setting (accredited or nonaccredited pulmonary hypertension center). Analyses were descriptive.

Results

In total, 98 physicians provided data on 153 patients, of whom 53 completed the patient self-complete form. Mean (standard deviation) patient age was 59.2 years, 59.5% female, and 73.2% considered operable. Of those who had undergone a surgery/procedure (n = 68), 82.1% had undergone pulmonary thromboendarterectomy (PTE), and 19.1% balloon pulmonary angioplasty (BPA). Overall, 82.4% were prescribed any pharmaceutical medication for their CTEPH; of those treated, 81.0% were prescribed anticoagulants. Monotherapy (45.7%) was the most reported regimen in nonaccredited settings; for accredited settings, this was dual therapy (45.5%). EQ-5D-5L scores were low with nearly a quarter of patients reporting problems with usual activities and mobility, and 26.4% needing to change work patterns.

Conclusions

Though treatment patterns generally followed guidelines, BPA was potentially underutilized. Dyspnea was common, despite treatment, with patients experiencing reduced quality of life, highlighting an unmet need.