Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026!

The Alliance for Pulmonary Hypertension introduced its 2025 “Patients Empowering Patients” (PEP) program, designed to harness the power of peer-to-peer support, on May 5, 2025, World Pulmonary Hypertension Day. The name “PEP Talks” is a playful nod to the acronym of the “PEP” program, and it embodies the encouraging and motivational spirit of traditional pep […]

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026! Read Post »

Efficacy of 10% lidocaine gel for injection site pain associated with treprostinil in the treatment of pulmonary hypertension: a report of four cases, JA Clinical Reports, November 29, 2025

This is a small study but it addresses a very important but often overlooked issue, that of injection site pain for pulmonary arterial hypertension patients being treated with sub-cutaneous treprostinil, which can significantly affect quality of life. The researchers found that topical 10% lidocaine gel provided rapid and effective relief of injection site pain, facilitating

Efficacy of 10% lidocaine gel for injection site pain associated with treprostinil in the treatment of pulmonary hypertension: a report of four cases, JA Clinical Reports, November 29, 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 »

UK-wide study validates the digital version of the emPHasis-10 QOL questionnaire for pulmonary arterial hypertension patients, European Respiratory Journal, May 2025

The emPHasis-10 questionnaire, designed to reflect that lived experience, has long been a trusted tool in both clinics and studies but until now, it was only available on paper. In a new UK-wide study, researchers led by Dr. Joseph Newman and colleagues tested the first digital version of emPHasis-10 using the Atom5™ smartphone app. Their

UK-wide study validates the digital version of the emPHasis-10 QOL questionnaire for pulmonary arterial hypertension patients, European Respiratory Journal, May 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 »

Physical Activity, Sleep, and Quality of Life in Pulmonary Arterial Hypertension: Novel Insights From Wearable Devices, Pulmonary Circulation, April 16, 2025

A study published in Pulmonary Circulation on April 16, 2025 investigated whether Fitbit wearable devices can provide meaningful clinical information about activity and sleep patterns in pulmonary arterial hypertension (PAH) patients. A total of 110 participants completed the 12-week baseline monitoring period. The cohort was median age 52.7 years (IQR: 40.9–60.5), female predominant (84% female),

Physical Activity, Sleep, and Quality of Life in Pulmonary Arterial Hypertension: Novel Insights From Wearable Devices, Pulmonary Circulation, April 16, 2025 Read Post »

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025

This article by Jen Cueva, a pulmonary hypertension patient, reflects on the challenges of managing setbacks, particularly for those with pulmonary arterial hypertension and other chronic conditions, emphasizing that setbacks are not failures but may represent opportunities to adjust and persevere. It highlights the importance of self-compassion, rest, and leaning on support systems to navigate

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025 Read Post »

Appraisal and evaluation of quality of life in pulmonary arterial hypertension instruments: A systematic review, Respiratory Medicine, November/December 2024

This systematic review, published on the Respiratory Medicine November-December 2024 issue, focuses on identifying and evaluating quality of life (QoL) measurement instruments specifically designed for patients with pulmonary arterial hypertension (PAH): EmPHasis-10, CAMPHOR, PAH SYMPACT, and LPHQ. Using the 2018 COSMIN guidelines, the researchers searched multiple medical databases to assess these instruments’ psychometric properties. While

Appraisal and evaluation of quality of life in pulmonary arterial hypertension instruments: A systematic review, Respiratory Medicine, November/December 2024 Read Post »

Poor sleep quality should not be overlooked in pulmonary arterial hypertension patient as it represents an additional disease burden, Acta Cardiologica

“Poor sleep quality is an overlooked symptom in patients with pulmonary arterial hypertension (PAH), however it may significantly contribute to disease burden”, claim the authors of a study titled “Sleep Quality and Its Predictors among Dyspnea, Fatigue and Exercise Capacity in Pulmonary Arterial Hypertension”, published in Acta Cardiologica. Karen Jacobson-Sive has summarised the key takeaways

Poor sleep quality should not be overlooked in pulmonary arterial hypertension patient as it represents an additional disease burden, Acta Cardiologica Read Post »

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024

A very touching and inspiring article by Jen Cueva was published in a recent edition of Pulmonary Hypertension News. This piece beautifully emphasizes gratitude as a transformative practice, even amid adversity. Jen effectively balances acknowledgment of the hardships of living with PH with a constructive approach to fostering positivity. The actionable advice—such as empathetic listening,

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024 Read Post »

Why compassion in healthcare matters, a blog post by Dr. Iain Armstrong, Chair of the Pulmonary Hypertension Association UK, October 15, 2024

As both a nurse and Chair of the Pulmonary Hypertension Association UK, Dr. Iain Armstrong is passionate about doing the right thing for patients. Compassion, he believes, lies at the heart of nursing and excellence in healthcare. Compassion, derived from the Latin “compassion” meaning “to suffer together,” is a vital strength that enables nurses to

Why compassion in healthcare matters, a blog post by Dr. Iain Armstrong, Chair of the Pulmonary Hypertension Association UK, October 15, 2024 Read Post »

Vacation tips for patients from Jolande de Jonge, pulmonary hypertension nurse consultant at Erasmus MC, Netherlands

Vacation is important, even if you have pulmonary hypertension. “Everyone needs a break now and then,” says Jolande de Jonge, pulmonary hypertension nurse consultant at Erasmus MC. In the latest edition of “Papillon,” the magazine of PHA Netherlands, she provides some tips for patients on vacation and says, “If there is anything we can support,

Vacation tips for patients from Jolande de Jonge, pulmonary hypertension nurse consultant at Erasmus MC, Netherlands Read Post »

New study suggests that QOL measurements add prognostic information and should be used in routine pulmonary arterial hypertension assessment and management, “Pulmonary Circulation”, June 2, 2024

A recent study, conducted at the Hunter-New England pulmonary arterial hypertension (PAH) clinic in Newcastle, Australia, investigated the assessment of patient-reported outcome measures (PROs) and quality of life (QOL) in patients in WHO Group 1, pulmonary arterial hypertension. It aimed to determine if QOL scores, measured using both disease-specific (PAH-SYMPACT©) and general (EQ-5D-5L™) tools, could

New study suggests that QOL measurements add prognostic information and should be used in routine pulmonary arterial hypertension assessment and management, “Pulmonary Circulation”, June 2, 2024 Read Post »

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free!

Colleen Brunetti started her career as a teacher, but after her pulmonary hypertension diagnosis was forced to leave this field. She began a journey to re-invent herself implementing a holistic lifestyle and went on to become a certified health coach. In her book “Defining the new normal: A guide to becoming more than your diagnosis”

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free! Read Post »

“Second souffle” (Second breath), a graphic novel about living with pulmonary arterial hypertension, just published by the French Pulmonary Hypertension Association HTaPFrance

We are thrilled to share a remarkable project undertaken by the French Pulmonary Hypertension Association, HTaPFrance. In collaboration with the talented author, Thomas Penin, they have brought to life a poignant story through a graphic novel. The graphic novel revolves around a fictional woman patient grappling with pulmonary arterial hypertension. The protagonist embarks on a

“Second souffle” (Second breath), a graphic novel about living with pulmonary arterial hypertension, just published by the French Pulmonary Hypertension Association HTaPFrance 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 »

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