Evidence map›Paper›PMID 41997708›Full record

SynthesisBMJ open2026

Patients' experiences of the path to sarcoma diagnosis: a qualitative systematic review and thematic synthesis.

Maya Elena Ramirez Schambye, Mathilde Frost Køtter, Johanne Aviaja Møldrup Rosing, Daniel Dybdal, René Mathiasen, Lisa Lyngsie Hjalgrim

Abstract readSystematic Review
In one paragraph

Synthesis in BMJ open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Maya Elena Ramirez SchambyeDepartment of Pediatric Oncology and Hematology, Rigshospitalet, Copenhagen, Denmark.ORCID http://orcid.org/0009-0009-0187-6665
Mathilde Frost KøtterDepartment of Pediatric Oncology and Hematology, Rigshospitalet, Copenhagen, Denmark.
Johanne Aviaja Møldrup RosingDepartment of Pediatric Oncology and Hematology, Rigshospitalet, Copenhagen, Denmark.
Daniel DybdalDepartment of Pediatric Oncology and Hematology, Rigshospitalet, Copenhagen, Denmark.
René MathiasenDepartment of Pediatric Oncology and Hematology, Rigshospitalet, Copenhagen, Denmark.
Lisa Lyngsie HjalgrimDepartment of Pediatric Oncology and Hematology, Rigshospitalet, Copenhagen, Denmark lisa.lyngsie.hjalgrim@regionh.dk.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo explore existing qualitative research on patients' experiences from the onset of symptoms to the diagnosis of sarcoma, with the purpose of identifying patient-perceived barriers at both patient and healthcare system levels and to highlight opportunities for improvement.

designSystematic review of qualitative studies using thematic synthesis.

methodsWe systematically searched Medline [Ovid], Embase [Ovid], PsycINFO [EBSCOhost] and CINAHL [EBSCOhost] from database inception to 11 April 2025 for qualitative studies reporting sarcoma patients' experiences during their diagnostic trajectory. The final search was conducted on 11 April 2025. All articles were screened against predefined inclusion and exclusion criteria and methodological quality was appraised using the Critical Appraisal Skills Programme qualitative checklist. Six studies conducted in Australia, the Netherlands and the UK were included. Data were analysed using a thematic synthesis approach guided by Thomas and Harden (2008). Confidence in the synthesised findings was assessed using the Grading of Recommendations Assessment, Development and Evaluation - Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERqual) approach.

resultsFour overarching themes emerged: patients' experience and interpretation of symptoms, diagnostic pathways, healthcare system factors, and reflections and recommendations. Key contributors to delayed diagnosis were symptom normalisation, misattribution by both patients and healthcare professionals, limited continuity of care and communication challenges. These findings were consistent across multiple countries, indicating relevance and validity in many settings. Patients emphasised the importance of disease awareness, persistence of patients and coordinated care.

conclusionsDiagnostic delays in sarcoma are influenced by both patient and healthcare systemic factors. Addressing these factors requires increased disease awareness among healthcare professionals and the public, improved coordination within the healthcare system, and targeted research to guide future interventions. This review provides cross-country insights into barriers to early sarcoma diagnosis, informing future priorities in clinical practice and research. PROSPERO REGISTRATION NUMBER: CRD420251030726.

Indexed as

Delayed DiagnosisSarcomaHumansQualitative ResearchAdult oncologyPaediatric oncologyPrimary Health CareSarcoma

Identifiers

PMID41997708
PMCPMC13110647

What Socratic holds

Textmetadata
LicenceCC BY-NC
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Registered trials

None linked

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 Socratic graph.