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 »

“Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, Advances in Pulmonary Hypertension, March 16, 2022

The authors of the study titled “Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, published in Advances in Pulmonary Hypertension, on March 16, 2022. Parents and caregivers of over 300 patients from a large paediatric pulmonary hypertension center were approached for participation in the survey, which was administered online and on

“Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, Advances in Pulmonary Hypertension, March 16, 2022 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 »

“Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, Pulmonary Circulation

Patient–health care provider (HCP) communication has long been identified as playing an essential role in medical care, say the authors of an article titled “Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, published in Pulmonary Hypertension. The objective of this study was to determine the words and phrases

“Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, Pulmonary Circulation 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 »

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 »

An international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic, Orphanet Journal of Rare Diseases, May 2021

During the COVID-19 pandemic, many health care systems suspended their non-urgent activities. Pulmonary Hypertension patients were subjected to the same rules as other patients during the COVID-19 pandemic, with no prioritised care despite their rare and severe condition. A consortium composed of pulmonary hypertension patient associations and scientific societies was created to launch the PH-CARE-COVID survey,

An international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic, Orphanet Journal of Rare Diseases, May 2021 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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