Web-based survey explores patient perspectives on palliative care in pulmonary arterial hypertension in the US, Pulmonary Circulation, June 24, 2026

A US web-based survey involving 200 respondents across 42 states was completed Sept–Oct 2023. The survey explored how patients with pulmonary arterial hypertension (PAH) understand and experience palliative care — which can be offered alongside standard treatment to ease symptoms and improve quality of life, but is underused and often misunderstood. Most respondents equated palliative […]

Web-based survey explores patient perspectives on palliative care in pulmonary arterial hypertension in the US, Pulmonary Circulation, June 24, 2026 Read Post »

Self-Image and pulmonary hypertension: a study supported by the UK Pulmonary Hypertension Association explores how living with the condition can shape the way patients see themselves

With the support of the UK Pulmonary Hypertension Association (PHA UK), trainee psychologist Jacob Pendrey, at Cardiff University in Wales, conducted a study exploring how pulmonary hypertension affects self-image — and the findings are both striking and important. Pulmonary hypertension is known to alter daily life not only through physical limitations, but through profound social

Self-Image and pulmonary hypertension: a study supported by the UK Pulmonary Hypertension Association explores how living with the condition can shape the way patients see themselves Read Post »

Pulmonary Hypertension Global Patient Survey (PHGPS), key insights and campaign pack

In October 2023, the Pulmonary Vascular Research Institute launched the Pulmonary Hypertension Global Patient Survey (PHGPS) to better understand the reality of what it is like to live with the condition worldwide. Almost 4,000 patients and carers from 90 countries took part in the survey and shared their experiences, which makes the PHGPS one of

Pulmonary Hypertension Global Patient Survey (PHGPS), key insights and campaign pack Read Post »

Defining quality standards of care in Connective Tissue Disease-Pulmonary Arterial Hypertension (CTD-PAH) and management best practices: a Delphi panel consensus, Rheumatology Advances in Practice, January 2026

A European Delphi panel involving 24 healthcare professionals from six countries reached consensus on best practices for managing pulmonary arterial hypertension associated with connective tissue diseases (CTD-PAH), particularly systemic sclerosis (SSc). Key areas of agreement included the importance of multimodal screening combining echocardiography, biomarkers and symptom evaluation, better access to echocardiography, and a multidisciplinary approach

Defining quality standards of care in Connective Tissue Disease-Pulmonary Arterial Hypertension (CTD-PAH) and management best practices: a Delphi panel consensus, Rheumatology Advances in Practice, January 2026 Read Post »

2025 expert consensus on the use of parenteral prostanoids in incident and prevalent PAH patients: The Italian perspective, Vascular Pharmacology, February 28, 2026

A consensus document featuring 10 statements, the main focus of which was the use of parenteral prostanoids, was developed by eight experts in pulmonary arterial hypertension during in-person and web-based meetings. Forty-six Italian physicians were invited online to rate each statement, indicating their agreement, neutrality or disagreement. These consensus statements are intended to support physicians

2025 expert consensus on the use of parenteral prostanoids in incident and prevalent PAH patients: The Italian perspective, Vascular Pharmacology, February 28, 2026 Read Post »

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

The Pulmonary Hypertension Global Patient Survey (PH GPS), the largest survey of its kind in the pulmonary hypertension field, was collaboratively designed through a multidisciplinary consensus process and disseminated by pulmonary hypertension organizations globally. The survey analyzed data from 3,329 adult patients (mean age 52.2 years, 81.7% female) and 135 paediatric patients, examining healthcare provision,

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

The Pulmonary Hypertension Association of Canada: Patient Voices From Bench to Bedside and Beyond, Journal of Cardiac Failure, November 2025

The Pulmonary Hypertension Association of Canada, PHA Canada, has published an article reporting on the findings of a survey where they asked a small group of patients what they valued about having a right heart catheterization (RHC), and how they would like their care providers to share the information. The article is not open access

The Pulmonary Hypertension Association of Canada: Patient Voices From Bench to Bedside and Beyond, Journal of Cardiac Failure, November 2025 Read Post »

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 »

The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension, Pulmonary Circulation, June 17, 2025

A study published in Pulmonary Circulation on June 17, 2025 has examined the relationships between fatigue, pain, anxiety, depression, and quality of life in 68 adults with pulmonary hypertension, recruited from global pulmonary hypertensions associations, who completed a series of self-report measures. The researchers found alarmingly high rates of these symptoms: 86.8% experienced clinical levels

The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension, Pulmonary Circulation, June 17, 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 »

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published

The EU Medical Device Regulation (MDR) and In Vitro Diagnostic Regulation (IVDR), introduced in 2017, aims to enhance patient safety, transparency, and information through stricter quality standards, performance evaluations, and oversight across the device lifecycle. But not all changes have been fully put into action, and many patients are still waiting to see benefits. To

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published Read Post »

Attitudes towards the use of the “clinical frailty scale” in pulmonary hypertension, a survey by the UK Pulmonary Hypertension Association, PHA UK

A survey was conducted by the UK Pulmonary Hypertension Association to explore the potential use of the “clinical frailty scale” alongside the commonly used EmPHasis-10 questionnaire to better understand how pulmonary hypertension affects patients’ quality of life. The scale, already used in other conditions like chronic obstructive pulmonary disease (COPD), assigns a score based on

Attitudes towards the use of the “clinical frailty scale” in pulmonary hypertension, a survey by the UK Pulmonary Hypertension Association, PHA UK Read Post »

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