SynthesisBMJ open2020
Adults' experiences of living with pulmonary hypertension: a thematic synthesis of qualitative studies.
Synthesis in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis 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
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 25 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
- A randomized controlled trial of self-help cognitive behavioural therapy for depression in adults with pulmonary hypertension.British journal of health psychology · 2025Trial
- 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
- Getting the Wheels in Motion to Deal With Unmet Psychological Need: A Reply to "The Pulmonary Hypertension Global Patient Survey: Physical and Psychosocial Impacts on Health-Related Quality of Life".Pulmonary circulation · 2026Article
- The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension.Pulmonary circulation · 2025Article
- Pulmonary Hypertension Care Delivery in the United States: Is It Time to Get with the Guidelines?American journal of respiratory and critical care medicine · 2025Article
- Article
- Relevance of patient-centered actigraphy measures in pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension: a qualitative interview study.BMC pulmonary medicine · 2024Article
- Dephosphorylated uncarboxylated Matrix-Gla-Protein as candidate biomarker for immune-mediated vascular remodeling and prognosis in pulmonary hypertension.Scientific reports · 2024Article
- Exploratory and confirmatory factor analysis of emPHasis-10: The health-related quality-of-life measure in pulmonary hypertension.Pulmonary circulation · 2024Article
- 'Fear, uncertain, tired…...' psychological distress among pulmonary hypertension patients: a qualitative interview study.BMC psychiatry · 2024Article
- Change in health-related quality of life at early follow-up in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension.Pulmonary circulation · 2024Article
- 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 · 2023Article
- Cognitive and behavioral processes predict anxiety and depression in patients with pulmonary hypertension.Pulmonary circulation · 2022Article
- Article
- Examining the impact of pulmonary hypertension on nonprofessional caregivers: A mixed-methods systematic review.Pulmonary circulation · 2022Review
- Consequences of a Diagnostic Label: A Systematic Scoping Review and Thematic Framework.Frontiers in public health · 2021Article
- Patients' perspectives on the challenges associated with receiving non-oral pulmonary arterial hypertension treatment: a mixed methods study.Therapeutic advances in respiratory diseaseArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 3 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesPulmonary hypertension is a life-shortening disease that has a considerable impact on quality of life. Improving our understanding of how individuals are affected and cope with the disease will help to improve services and outcomes. This review synthesises the published qualitative research that has listened to adults discuss their experiences of living with the disease.
designA comprehensive systematic search of four databases was conducted in May 2020: Web of Science, PubMed, PsycINFO and Cochrane Library. Suitable studies were evaluated using the Critical Appraisal Skills programme. Findings from the studies were extracted and subjected to a thematic synthesis.
resultsNineteen articles were identified reflecting the experiences of over 1900 individuals impacted by pulmonary hypertension from Europe, North and South America and Asia. Ten studies did not report participant's WHO functional class of pulmonary hypertension, which resulted in comparing experiences between different severity difficult. All studies met the majority of the quality assessment items. Six descriptive themes emerged discussing participant's experiences of diagnosis, treatment, prognosis, healthcare professionals, impact and coping with pulmonary hypertension. Four higher order analytical themes were developed from the descriptive themes, reflecting: (i) uncertainties and anxiety that participants encountered related to pulmonary hypertension; (ii) lack of recognition of the impact of the condition; (iii) frustration at the paucity of awareness of pulmonary hypertension in society and healthcare settings and (iv) participant's accounts of transitioning through different stages of living with the disease.
conclusionsThese findings form the first synthesis of experiences of life in individuals impacted by pulmonary hypertension and illustrate the multifaceted impact of the condition. The voices of numerous groups are missing from the literature highlighting the need for additional research. The results have implications for clinical practice emphasising the role of educational and psychological therapies to support those with the disease.
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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.