Multinational real-world survey offers insights into key factors in delays to diagnosis for pulmonary arterial hypertension patients, Therapeutic Advances in Respiratory Disease, February 2024

Delays to diagnosis in pulmonary arterial hypertension still persist today, despite the substantial progress made in the field. This ongoing issue continues to pose a significant challenge, highlighting the need for continued efforts to improve early detection and intervention strategies. Delays in diagnosis not only prolong patient suffering but also lead to missed opportunities for […]

Multinational real-world survey offers insights into key factors in delays to diagnosis for pulmonary arterial hypertension patients, Therapeutic Advances in Respiratory Disease, February 2024 Read Post »

Latest survey by the UK Pulmonary Hypertension Association, PHA UK, reveals persistent challenges faced by patients, notably in receiving a diagnosis

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

Latest survey by the UK Pulmonary Hypertension Association, PHA UK, reveals persistent challenges faced by patients, notably in receiving a diagnosis 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 »

Findings of UK Pulmonary Hypertension Association, PHA UK, survey to investigate how patients and caregivers feel about their clinical data being accessed by researchers are now available

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.

Findings of UK Pulmonary Hypertension Association, PHA UK, survey to investigate how patients and caregivers feel about their clinical data being accessed by researchers are now available 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 »

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care.

The PVRI survey is addressed at health care professionals to identify gaps and challenges that limit access to quality professional clinical care for patients with pulmonary hypertension. The results will be used to develop action plans to help address local needs, mainly in the education, diagnosis, and treatment of pulmonary vascular diseases. The survey results

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care. 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 »

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023

A study titled “Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis” was recently published on Pulmonary Circulation. It was conducted on adults with pulmonary hypertension (n = 65) and caregivers (n = 29), who completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion,

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023 Read Post »

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF)

With this survey the EPF Youth Group (YG) of the European Patients Forum (EPF) aims to collect key information on the importance and impact of young patient’s involvement in patient organisations. It is not always easy to involve young patients in patient organisations, as many of us who run patient associations well know. We hope this survey

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF) Read Post »

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