Research AppraisalSystematic Review

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

BMJ openSchambye, Maya Elena Ramirez, Køtter, Mathilde Frost, Rosing, Johanne Aviaja Møldrup et al.17 Apr 2026DOI

Clinical Snapshot

100CEBM
Evidence: StrongSystematic Review

PICO Framework

P — PopulationPatients diagnosed with sarcoma
I — InterventionQualitative exploration of diagnostic experiences
C — ComparatorNot applicable (qualitative synthesis)
O — OutcomesPatient-perceived barriers, experiences, and recommendations for improving diagnostic pathways

Bottom Line

This well-conducted qualitative systematic review identifies consistent barriers to timely sarcoma diagnosis across multiple healthcare systems. Key findings include symptom normalisation by patients, misattribution by healthcare professionals, poor care continuity, and communication breakdowns. The cross-country consistency of findings, including Australian data, suggests these barriers are systemic rather than country-specific. For Australian clinicians, this reinforces the importance of maintaining high clinical suspicion for sarcoma, particularly for persistent or unusual musculoskeletal symptoms. The review highlights the need for improved disease awareness among healthcare professionals, better care coordination, and enhanced patient-provider communication. While the evidence is limited to six studies, the rigorous methodology and use of GRADE-CERQual assessment provides confidence in the findings. Implementation of the identified recommendations could improve diagnostic timeliness and patient experience in sarcoma care.

Evidence: Strong

Key Findings

  • P Value: Not applicable for qualitative synthesis

  • Effect Size: Not applicable for qualitative synthesis

  • Primary Outcome: Four overarching themes: patients' experience and interpretation of symptoms, diagnostic pathways, healthcare system factors, and reflections and recommendations

  • Nnt Or Sensitivity: Key barriers identified: symptom normalisation, misattribution by patients and healthcare professionals, limited continuity of care, and communication challenges

  • Confidence Interval: Not applicable for qualitative synthesis

Clinical Application

Recommendations are feasible but require system-wide changes including education, care coordination, and communication improvements Highly relevant to Australian practice given inclusion of Australian studies and consistency of findings across healthcare systems. Aligns with RACGP guidelines on cancer diagnosis and referral pathways Patients with suspected or diagnosed sarcoma across primary and secondary care settings

Abstract

OBJECTIVE: To 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. DESIGN: Systematic review of qualitative studies using thematic synthesis. METHODS: We 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. RESULTS: Four 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. CONCLUSIONS: Diagnostic 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.

References

  1. 1.Schambye, M. E. R., Køtter, M. F., Rosing, J. A. M., Dybdal, D., Mathiasen, R., & Hjalgrim, L. L. (2026). Patients' experiences of the path to sarcoma diagnosis: a qualitative systematic review and thematic synthesis. BMJ Open. https://doi.org/10.1136/bmjopen-2025-115342
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