ArticleJournal of primary care & community health
The Odyssey from Symptom to Diagnosis of Pulmonary Hypertension from the Patients and Spouses Perspective.
Article in Journal of primary care & community health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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
10 citing papers in PubMed, 15 citations in OpenAlex.
- Health service access and delivery for people living with rare disorders: a scoping review.Orphanet journal of rare diseases · 2026Article
- Article
- Dilemmas of Self-Management in Patients with Pulmonary Arterial Hypertension: A Descriptive Phenomenological Study.Patient preference and adherence · 2026Article
- Gaps in access to pulmonary hypertension care and opportunities for improvement: a multi-site qualitative study.BMC pulmonary medicine · 2025Article
- Societal Costs Associated With Pulmonary Arterial Hypertension Subgroups: A Study Utilizing Linked National Registries.Pulmonary circulation · 2025Article
- '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
- Societal costs associated with pulmonary arterial hypertension: A study utilizing linked national registries.Pulmonary circulation · 2023Article
- Social and Family Challenges of Having a Child Diagnosed with Phelan-McDermid Syndrome: A Qualitative Study of Parents' Experiences.International journal of environmental research and public health · 2022Article
- 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
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
INTRODUCTION/
objectiveDiagnostic delays in pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are related to increased morbidity and mortality. The risk of a delayed, or even a missed, diagnosis is high as the conditions are rare. The aim was to describe patients' and spouses' experiences of the journey from the first symptom to an established diagnosis.
methodsA secondary analysis of 31 transcripts, based on 2 primary datasets containing interviews with 17 patients and 14 spouses, was carried out and analyzed according to qualitative content analysis.
resultsOne overarching category was revealed from the content analysis;
conclusionPatients' and spouses' lives were negatively affected by having to search for a correct diagnosis. In order for health care to identify rare diseases earlier, a well-functioning and responsive health care system, in primary care as well as in specialist care, is needed. Symptoms like breathlessness and fatigue are often unspecific but should not be ignored. Keeping the patient and spouse in the loop, and providing information that the search for an answer might take time is essential for health care providers to create trust.
Indexed as
Identifiers
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.