ReviewEuropean respiratory review : an official journal of the European Respiratory Society2013
Understanding the impact of pulmonary arterial hypertension on patients' and carers' lives.
Review in European respiratory review : an official journal of the European Respiratory Society, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 81 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
81 citing papers in PubMed, 3 syntheses or guidelines pooled it, 153 citations in OpenAlex.
- Brazilian guidelines for the pharmacological treatment of pulmonary hypertension. Official document of the Brazilian Thoracic Society based on the Grading of Recommendations Assessment, Development, and Evaluation methodology.Respiratory research & clinical practice · 2026Guideline
- Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials: a systematic review, meta-analysis and health-related quality of life framework.European respiratory review : an official journal of the European Respiratory Society · 2025Pooled it
- Cost Effectiveness of Bosentan for Pulmonary Arterial Hypertension: A Systematic Review.Canadian respiratory journal · 2018Pooled it
- Effect of low-flow oxygen therapy on 6 minute walk test in pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension: a randomized non-inferiority crossover trial.European heart journal open · 2026Article
- Socioeconomic Burden of Pulmonary Arterial Hypertension in Patients and Caregivers: A Canadian Cross-Sectional Study.CJC open · 2026Article
- Article
- Understanding the burden of pulmonary arterial hypertension among patients and caregivers through narrative medicine: data from Italian multicentre observational INSPECTIO study.BMJ open respiratory research · 2026Observational
- Complementary assessment of cardiopulmonary morphometric changes in COPD using 3D multidetector computed tomography: relationship with functional indices.BMC pulmonary medicine · 2026Article
- Article
- Reliability and validity of the Turkish version of the Barthel Index-dyspnea in patients with pulmonary hypertension.Turkish journal of medical sciences · 2026Article
- The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients.ERJ open research · 2025Article
- Pulmonary Hypertension Global Patient Survey: A Call to Action 2025.Pulmonary circulation · 2025Article
- Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations.Orphanet journal of rare diseases · 2025Review
- Economic Burden Associated with Pulmonary Arterial Hypertension in the United States.PharmacoEconomics · 2025Article
- Development and validation of a mortality predictive model for ICU patients with primary pulmonary hypertension.Scientific reports · 2024Article
- The association of quality of life and fear of progression in patients with pulmonary hypertension: a cross-sectional network analysis.BMC psychology · 2024Article
- 'Fear, uncertain, tired…...' psychological distress among pulmonary hypertension patients: a qualitative interview study.BMC psychiatry · 2024Article
- Pulmonary Hypertension in Women.Methodist DeBakey cardiovascular journal · 2024Review
- Sexual function is impaired in women and men with pulmonary hypertension.Clinical research in cardiology : official journal of the German Cardiac Society · 2023Article
- Patient perspectives on pulmonary hypertension in the United States: Burdens, expectations, and goals.Pulmonary circulation · 2023Review
21 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Pulmonary arterial hypertension (PAH) is a rare, debilitating and rapidly progressive disease. Although there have been important medical advances in PAH management, the search for a cure continues. Despite an increased understanding of the disease, data on the wider effect of PAH on patients and carers, beyond the clinical symptoms, are still limited. In order to explore this, a large-scale international survey investigated four key areas affected by PAH (physical and practical, emotional, social, and information needs) and provides new insight into patients' and carers' experiences of living with the disease. The results from the survey highlight not only the limited ability of patients to carry out everyday tasks, but also the financial impact and social isolation experienced by both patients and carers. The study confirmed that a decline in a patient's World Health Organization functional class, which indicates an increase in clinical severity of the disease, is associated with greater limitations. Results from the survey demonstrate the need for multidisciplinary PAH management and a comprehensive standard of care to assess and improve all aspects of well-being for both patients and carers. In addition, they underline the need for updated PAH guidelines that address these needs.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.