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 […]
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
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
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 »
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,
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
Last year the Canadian Pulmonary Hypertension Association, PHA Canada, conducted a survey to explore the financial and employment impacts of pulmonary arterial hypertension in Canada. The aim of the research was to understand how this condition affects patients’ work and daily activities. The survey also captured information about patients’ need for caregivers and the impact
The UK Pulmonary Hypertension Association launched a survey on nutrition and pulmonary arterial hypertension last year in March in which they asked patients about eating habits, food preferences, and cooking or weight management challenges. The findings were announced at the Pulmonary Vascular Research Institute (PVRI)’s congress in January 2024 and, more recently, on social media.
The findings from the Pulmonary Hypertension Association UK‘s latest major survey, presented at the recent Pulmonary Vascular Research Institute (PVRI) conference in London, underscore the persistent challenges faced by pulmonary hypertension patients in receiving a diagnoses. Time to diagnosis remains a critical issue, with over half of the respondents reporting it took more than a year to receive
The findings of the UK Pulmonary Hypertension Association’s major research into people’s lived experiences of pulmonary hypertension have now been published and you can find them here. The survey was completed 859 times, and the results will underpin the UK Pulmonary Hypertension Association’s charitable activity for the next five years. Disclaimer While every possible effort
The PHA UK’s survey, launched in June 2023, aimed at understanding patient and caregivers’ thoughts about their clinical data (health records) being accessed as part of a study. A total of 331 persons responded to the survey. The findings have now been published and are available at this link on the PHA UK website.
