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 »

Findings from the UK Pulmonary Hypertension Association (PHA UK)’s major research into people’s lived experiences of pulmonary hypertension published, November 30, 2023

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

Findings from the UK Pulmonary Hypertension Association (PHA UK)’s major research into people’s lived experiences of pulmonary hypertension published, November 30, 2023 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 »

Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension

PHA UK’s is the first survey ever conducted about pulmonary hypertension and nutrition in the UK. As part of PHA UK’s work to help people enjoy a better quality of life with pulmonary hypertension, they would like to explore more about the role of nutrition and the difference it can make in this disease area.

Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension Read Post »

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU

The European Commission (EC) is working on a proposal for an EU Disability Card, to make it easier for people with disabilities to access some services while travelling within the EU. There is currently no mutual recognition of disability status between the EU Member States. This can cause difficulties for persons with disabilities travelling in the EU.

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU Read Post »

The Pulmonary Hypertension Association (PHA UK) launches new survey to understand life with pulmonary hypertension, deadline was January 31, 2023

he Pulmonary Hypertension Association (PHA UK) iTs inviting adults with pulmonary hypertension, living in the UK, to take part in a new survey to better understand life with pulmonary hypertension. The deadline for submissions is now up (January 31, 2023) but we look forward to the hearing about the findings once the study is over.

The Pulmonary Hypertension Association (PHA UK) launches new survey to understand life with pulmonary hypertension, deadline was January 31, 2023 Read Post »

“Considerations When Selecting Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension: A Narrative Review”, CHEST

The authors of this study on patient-reported outcome measures (PROMs), published in CHEST in November 2022, conducted a review of the published literature and clinical trials in pulmonary hypertension to identify and evaluate PROMs that assess pulmonary hypertension-specific health related quality of life (HRQoL) for use in clinical studies. The PROMs analysed were the Cambridge

“Considerations When Selecting Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension: A Narrative Review”, CHEST Read Post »

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey”, Pulmonary Circulation

A patient and carer survey was conducted in the USA with the aim of determining if participation in a pulmonary hypertension support group has a significant effect on quality of life (QOL) in a population of patients with pulmonary hypertension and their caregivers using the emPHasis-10 questionnaire. 165 subjects were enrolled in the study; 122

Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey”, Pulmonary Circulation Read Post »

“Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, a large-scale international survey on the impact of the disease on patients’ and carers’ lives”, European Respiratory Review

A large-scale international survey carried out in 2011 investigated four key areas affected by pulmonary arterial hypertension: physical and practical, emotional, social, and information needs and provided new insights into patients’ and carers’ experiences of living with the disease. Citation “Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, Loïc Guillevin, Iain

“Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, a large-scale international survey on the impact of the disease on patients’ and carers’ lives”, European Respiratory Review Read Post »

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