Day-to-day life/quality of life – PULMONARY HYPERTENSION

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 »

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 »

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 »

“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 »

“Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review

Abstract Improved care in pulmonary arterial hypertension has led to increased longevity for patients, with a paralleled evolution in the nature of their needs. There is more focus on the impact of the disease on their day-to-day activities and quality of life, and a holistic approach is coming to the front of pulmonary arterial hypertension

“Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review 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 »