ReviewThe European respiratory journal2019
The importance of patient perspectives in pulmonary hypertension.
Review in The European respiratory journal, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 72 papers, 2 of them syntheses that pooled it.
What it found
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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
72 citing papers in PubMed, 2 syntheses or guidelines pooled it, 119 citations in OpenAlex.
- 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
- Adults' experiences of living with pulmonary hypertension: a thematic synthesis of qualitative studies.BMJ open · 2020Pooled it
- Effects of Web-Based Symptom Monitoring Program on Symptom Interference, Physical Activity, and Emergency Department Readmissions in Patients With Pre-Capillary Pulmonary Hypertension: Randomized Controlled Trial.Journal of medical Internet research · 2025Trial
- The effect of high altitude (2500 m) on incremental cycling exercise in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension: a randomised controlled crossover trial.The European respiratory journal · 2024Trial
- Individually Tailored Remote Physiotherapy Program Improves Participation and Autonomy in Activities of Everyday Life along with Exercise Capacity, Self-Efficacy, and Low-Moderate Physical Activity in Patients with Pulmonary Arterial Hypertension: A Randomized Controlled Study.Medicina (Kaunas, Lithuania) · 2022Trial
- Patient Perceptions of a Video-Based Educational Platform for Pulmonary Arterial Hypertension: A Qualitative Study of the SMART-PAH Course.Pulmonary circulation · 2026Article
- Shared Decision-Making During Pulmonary Arterial Hypertension Therapy Selection: A Patient and Clinician Survey.Pulmonary circulation · 2026Article
- 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
- Validation Analysis of the Polish-Translated Version of EmPHasis-10 Health-Related Quality of Life Questionnaire in Patients with Pulmonary Arterial Hypertension.Journal of clinical medicine · 2026Article
- Expert consensus on patient engagement strategies for improving patient activation and shared decision making in pulmonary arterial hypertension.Journal of the American Association of Nurse Practitioners · 2026Article
- Article
- The Pulmonary Hypertension Global Patient Survey: Physical and Psychosocial Impacts on Health-Related Quality of Life.Pulmonary circulation · 2026Article
- The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients.ERJ open research · 2025Article
- Gaps in access to pulmonary hypertension care and opportunities for improvement: a multi-site qualitative study.BMC pulmonary medicine · 2025Article
- Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey.Pulmonary therapy · 2025Article
- Article
- 2023 TSOC-TACVPR-TACPAH Consensus Statement of the Rehabilitation on Patients with Pulmonary Hypertension.Acta Cardiologica Sinica · 2024Article
- Exploring the patient perspective in pulmonary hypertension.The European respiratory journal · 2024Article
- Clinical trial design, end-points, and emerging therapies in pulmonary arterial hypertension.The European respiratory journal · 2024Review
- Editorial on "A systematic review of the impact of pulmonary thromboendarterectomy on health related quality of life".Pulmonary circulation · 2024Article
12 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 4 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The assessment of objective measurement of cardiopulmonary status has helped us achieve better clinical outcomes for patients and develop new therapies through to the point of market access; however, patient surveys indicate that more can be done to improve holistic care and patient engagement. In this multidisciplinary review, we examine how clinical teams can acknowledge and embrace the individual patient's perspective, and thus improve the care for individual patients suffering from pulmonary hypertension by cultivating the importance and relevance of health-related quality of life in direct clinical care. At the individual level, patients should be provided with access to accredited specialist centres which provide a multidisciplinary approach where there is a culture focused on narrative medicine, quality of life, shared decision making and timely access to palliative care, and where there is participation in education. On a larger scale, we call for the development, expansion and promotion of patient associations to support patients and carers, lobby for access to best care and treatments, and provide input into the development of clinical trials and registries, focusing on the patients' perspective.
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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.