The latest National Audit of Pulmonary Hypertension in the United Kingdom shows high levels of care despite increasing number of patients

Every year, the National Audit of Pulmonary Hypertension (NAPH) measures the quality of care provided to pulmonary hypertension patients in the United Kingdom by asking specialist centres to provide data that is then compared against a set of 15 agreed standards. The latest audit, covering 2023-24, shows that high levels of care continue – despite centres seeing […]

The latest National Audit of Pulmonary Hypertension in the United Kingdom shows high levels of care despite increasing number of patients Read Post »

Future treatment paradigms in pulmonary arterial hypertension: a personal view from physicians, health authorities, and patients, The Lancet, February 20, 2025

An article titled “Future treatment paradigms in pulmonary arterial hypertension: a personal view from physicians, health authorities, and patients”, was published in The Lancet on February 20, 2025. It reports on discussions held between a group of international experts at the 20th Global CardioVascular Clinical Trialists Forum, CVCT (Washington DC, USA), patients’ representatives, and members

Future treatment paradigms in pulmonary arterial hypertension: a personal view from physicians, health authorities, and patients, The Lancet, February 20, 2025 Read Post »

A proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, Patient Education and Counseling, February 19, 2025

The objective of the study published on February 19, 2025 as a Journal pre proof on Patient Edcuation and Counseling (§), is to develop a proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, based on a systematic review of qualitative literature (64 publications). The authors offer

A proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, Patient Education and Counseling, February 19, 2025 Read Post »

Medication Non-Adherence in Patients with Pulmonary Arterial Hypertension: The Pulmonary Hypertension Association (PHA) Registry (PHAR), Annals of the American Thoracic Society, February 18, 2025

Medication non-adherence in pulmonary arterial hypertension (PAH) can significantly impact patient outcomes, yet its prevalence and consequences remain understudied. This multi-center registry analysis examined self-reported non-adherence rates among pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension (CTEPH) patients, identifying key socioeconomic predictors and associated healthcare outcomes. Using data from the Pulmonary Hypertension Association Registry (PHAR),

Medication Non-Adherence in Patients with Pulmonary Arterial Hypertension: The Pulmonary Hypertension Association (PHA) Registry (PHAR), Annals of the American Thoracic Society, February 18, 2025 Read Post »

Polish version of the Health Policy Partnership’s pulmonary arterial hypertension policy toolkit presented in Warsaw at the Healthcare Priorities Conference, January 29, 2025

Following the official launch of its pulmonary arterial hypertension policy toolkit in Barcelona last November at PHAEUROPE‘s Annual Conference, The Health Policy Partnership has been working on dissemination opportunities of this important work, which was endorsed by the Alliance for Pulmonary Hypertension along with several of the major patient associations active in the field. On

Polish version of the Health Policy Partnership’s pulmonary arterial hypertension policy toolkit presented in Warsaw at the Healthcare Priorities Conference, January 29, 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 »

Prognostic relevance of exercise pulmonary hypertension: results of the multicentre PEX-NET Clinical Research Collaboration, European Respiratory Journal

The PEX-NET (Pulmonary Haemodynamics during Exercise Network) registry enrolled patients who underwent clinically indicated right heart catheterisations both at rest and ergometer exercise from 23 PH centres worldwide. The aim of the study was to explore the prognostic relevance of exercise haemodynamics and its added value to resting haemodynamics are missing. The study finds that

Prognostic relevance of exercise pulmonary hypertension: results of the multicentre PEX-NET Clinical Research Collaboration, European Respiratory Journal 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 »

Special issue of “Transplant International” addresses race, gender, socioeconomic and geographic disparities in transplantation

Transplant International has published a special issue of its journal on “Diversity, Equity, and Inclusion in Transplantation”. This issue presents a collection of studies that examine inequities in transplantation related to race, gender, socioeconomics, and geography, providing evidence and insights into these persistent disparities. Download the pdf of the special issue of Transplant International at

Special issue of “Transplant International” addresses race, gender, socioeconomic and geographic disparities in transplantation 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 »

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 »

Efficacy and Safety of Sotatercept Across Ranges of Cardiac Index in Patients with Pulmonary Arterial Hypertension, Journal of Heart and Lung Transplantation, December 5, 2024

Pooled data from the PULSAR and STELLAR trials were used for this study, published on December 5, 2024 on the The Journal of Heart and Lung Transplantation, which compared effects of the activin signaling inhibitor sotatercept (Winrevair) across pulmonary arterial hypertension (PAH) subgroups stratified by baseline cardiac index (CI). The analysis evaluated 429 participants divided

Efficacy and Safety of Sotatercept Across Ranges of Cardiac Index in Patients with Pulmonary Arterial Hypertension, Journal of Heart and Lung Transplantation, December 5, 2024 Read Post »

Challenges associated with non-oral pulmonary arterial hypertension treatments, Aldo Aguirre-Camacho, Therapeutic Advances in Respiratory Disease

A study titled “Patients’ perspectives on the challenges associated with receiving non-oral pulmonary arterial hypertension treatment: a mixed methods study”, by Aldo Aguirre-Camacho, was published on “Therapeutic Advances in Respiratory Disease” on November 21, 2024. The study investigates how non-oral treatments for pulmonary arterial hypertension impact patients’ quality of life beyond the challenges posed by

Challenges associated with non-oral pulmonary arterial hypertension treatments, Aldo Aguirre-Camacho, Therapeutic Advances in Respiratory Disease 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 »

The first evaluation report of the European Reference Networks since their launch in 2017 has now been published by the EU Commission

European Reference Networks (ERNs) represent an innovative approach to addressing rare and complex diseases across Europe. These virtual networks connect specialized healthcare providers, creating a collaborative platform that transcends national boundaries to improve patient diagnosis, treatment, and care. Comprising 24 distinct networks, the European Reference Network is a complex ecosystem involving approximately 1,.600 healthcare professional

The first evaluation report of the European Reference Networks since their launch in 2017 has now been published by the EU Commission Read Post »

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK.

Developed by psychologists, and supported by the Pulmonary Hypertension Association UK, this four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT) to help you change your thinking habits and behaviours. You can work through them in your own time and in your own home. The programme has been tested with

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK. 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 »

Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions, Vallerie V. McLaughlin, Marc Humbert, “Circulation”, November 18, 2024

This article, titled “Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions”, published on November 18, 2024 on Circulation, is undoubtedly encouraging and hopeful, showcasing the tremendous progress made in the field of pulmonary hypertension. It highlights how far we’ve come, from no treatments to over a dozen targeted therapies addressing multiple pathways, improving the

Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions, Vallerie V. McLaughlin, Marc Humbert, “Circulation”, November 18, 2024 Read Post »

SGLT2 Inhibitors (originally designed for treating diabetes-2) show potential to boost survival in pulmonary arterial hypertension patients, Isabella Hornick, “Healio”, October 2024

An article by medical journalist Isabella Hornick recently published on “Healio” reports on a retrospective study which suggests that sodium-glucose cotransporter-2 (SGLT2) inhibitors may significantly reduce all-cause mortality in patients with pulmonary arterial hypertension (PAH). While these findings are promising, further prospective clinical trials are needed to confirm the results and address potential biases, according

SGLT2 Inhibitors (originally designed for treating diabetes-2) show potential to boost survival in pulmonary arterial hypertension patients, Isabella Hornick, “Healio”, October 2024 Read Post »

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension

The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources. The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension Read Post »

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