Real-life use of quality of life questionnaires in pulmonary arterial hypertension in Spain, European Journal of Cardiovascular Nursing, July 7, 2025

Despite strong recommendations to assess quality of life in pulmonary arterial hypertension patients from the World Symposia on Pulmonary Hypertension (WSPH) in 2018 and 2024, and from the 2022 European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint pulmonary hypertension guidelines, this evaluation remains rarely implemented in clinical practice. This cross-sectional study of […]

Real-life use of quality of life questionnaires in pulmonary arterial hypertension in Spain, European Journal of Cardiovascular Nursing, July 7, 2025 Read Post »

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025

The key findings from the Pulmonary Hypertension Global Patient Survey (PHGPS) adult cohort of 3,329 patients have been published in the ERJ Open Research 2025, highlighting the achievements, shortcomings & regional disparities of clinical care & research globally. The Pulmonary Hypertension Global Patient Survey represents the most extensive survey of its type in the pulmonary

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025 Read Post »

Women with pulmonary arterial hypertension rely heavily on caregivers but face major gaps in meeting their support needs, The American Journal of Managed Care, June 18, 2025

A new study presented at the American Thoracic Society 2025 Conference reveals that women with pulmonary arterial hypertension (PAH) rely heavily on family caregivers but face significant gaps in meeting their support needs. Methodology Researchers conducted a 45-minute web-based quantitative survey across multiple countries, targeting women aged 21-50 with pulmonary arterial hypertension. Patient-reported outcome measures

Women with pulmonary arterial hypertension rely heavily on caregivers but face major gaps in meeting their support needs, The American Journal of Managed Care, June 18, 2025 Read Post »

Survey uncovers significant emotional and social impacts beyond traditional medical outcomes for women with pulmonary arterial hypertension, Healio, May 19, 2025

Isabella Hornick’s article, “ Women with Pulmonary Arterial Hypertension Report Struggles with Family Planning and Caregiver Needs”, published by Healio on May 19, 2205, reports on comprehensive survey conducted on 275 women with pulmonary arterial hypertension aged 21-50 from the U.S., U.K., Canada, and Germany. The average age of the included women differed at PAH

Survey uncovers significant emotional and social impacts beyond traditional medical outcomes for women with pulmonary arterial hypertension, Healio, May 19, 2025 Read Post »

Exploring the relationship between sleep difficulties, worry, mood and health-related quality of life in adults living with pulmonary hypertension, a study by researchers at the University of Sheffield, UK

Sleep difficulties are commonly reported by individuals living with pulmonary hypertension (PH); however, there is limited research examining their impact. In other chronic health conditions, sleep problems can affect health-related quality of life and mental wellbeing, potentially increasing the likelihood of experiencing anxiety and low mood. Establishing this relationship in adults with pulmonary hypertension could

Exploring the relationship between sleep difficulties, worry, mood and health-related quality of life in adults living with pulmonary hypertension, a study by researchers at the University of Sheffield, UK Read Post »

Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey, Pulmonary Therapy, March 18, 2025

A study published on March 18 2025 in Pulmonary Therapy provides a comprehensive view of pulmonary hypertension in Japan through a nationwide survey of 160 patients (119 with pulmonary arterial hypertension (PAH) and 41 with chronic thromboembolic pulmonary hypertension (CTEPH) and 211 physicians. We are particularly pleased to publish this article as one of the

Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey, Pulmonary Therapy, March 18, 2025 Read Post »

Pathway to care, treatment and disease burden of pulmonary arterial hypertension: a real-world survey of physicians and patients in Latin America, British Medical Journal, December 31, 2024

An article published on the British Medical Journal Open on December 31, 2024, titled “Pathway to care, treatment and disease burden of pulmonary arterial hypertension: a real-world survey of physicians and patients in Latin America”, reports on the findings of a cross-sectional survey with retrospective data collection. A total of 246 physicians, from University/teaching hospitals,

Pathway to care, treatment and disease burden of pulmonary arterial hypertension: a real-world survey of physicians and patients in Latin America, British Medical Journal, December 31, 2024 Read Post »

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones

The year 2024 has seen significant progress in the fight against pulmonary hypertension, marked by critical milestones across research, clinical care, advocacy, awareness, and patient engagement, with an unprecedented level of patient involvement in scientific discourse. As we head into 2025 with all that has been achieved we are well positioned in furthering our mission!

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones Read Post »

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS)

Almost 4,000 patients and carers across 85 countries completed Phase 1 of the Pulmonary Hypertension Global Patient Survey (PH GPS). The survey was translated into 24 languages and launched in October 2023. The survey was written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary hypertension associations of Europe,

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS) Read Post »

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation

A recent study published in Pulmonary Circulation highlights the vital role of proactive communication in improving medication persistence among individuals with pulmonary arterial hypertension. The study, titled PERSIST (Practices affEcting macitentan and selexipag patient persistence Rates utilizing pulmonary arterial hypertension clinical Site and patIent perSpecTives), surveyed 134 patients and 23 healthcare professionals across the United

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation Read Post »

Multinational real-world survey offers insights into key factors in delays to diagnosis for pulmonary arterial hypertension patients, Therapeutic Advances in Respiratory Disease, February 2024

Delays to diagnosis in pulmonary arterial hypertension still persist today, despite the substantial progress made in the field. This ongoing issue continues to pose a significant challenge, highlighting the need for continued efforts to improve early detection and intervention strategies. Delays in diagnosis not only prolong patient suffering but also lead to missed opportunities for

Multinational real-world survey offers insights into key factors in delays to diagnosis for pulmonary arterial hypertension patients, Therapeutic Advances in Respiratory Disease, February 2024 Read Post »

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023

This survey, the first of its kind, has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. The survey has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023 Read Post »

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care.

The PVRI survey is addressed at health care professionals to identify gaps and challenges that limit access to quality professional clinical care for patients with pulmonary hypertension. The results will be used to develop action plans to help address local needs, mainly in the education, diagnosis, and treatment of pulmonary vascular diseases. The survey results

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care. Read Post »

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023

A study titled “Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis” was recently published on Pulmonary Circulation. It was conducted on adults with pulmonary hypertension (n = 65) and caregivers (n = 29), who completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion,

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023 Read Post »

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