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Poster display

4073 - Patient perspective of the diagnostic sarcoma pathway; results from a national sarcoma patient survey in England


10 Oct 2016


Poster display


Eugenie Younger


Annals of Oncology (2016) 27 (6): 483-492. 10.1093/annonc/mdw388


E. Younger1, J. Whelan2, R.L. Jones1, L. Bennister3, W.T. van der Graaf1

Author affiliations

  • 1 Sarcoma, Royal Marsden Hospital NHS Foundation Trust, SW3 6JJ - London/GB
  • 2 Sarcoma, University College London Hospital, London/GB
  • 3 Sarcoma, Royal Marsden Hospital NHS Foundation Trust, London/GB


Abstract 4073


Sarcomas are rare and heterogeneous malignancies that can occur at any age and arise at any anatomic site. In comparison with other common cancers, patients with sarcoma report a significantly poorer experience of their patient journey. Understanding the patients' perspective of diagnosis, treatment and follow-up will influence management and outcomes for future sarcoma patients.


Questionnaires were designed by Quality Health in conjunction with Sarcoma UK, the only all sarcoma charity in the UK, patient advocates and sarcoma clinicians. In England, questionnaires were dispatched by post to a sample of 900 patients drawn from respondents to National Cancer Patient Experience Surveys 2010-14 (fieldwork January-March 2015). Here we focus on the diagnostic pathway.


Response rate was 64% (558 respondents; 418 soft tissue, 140 bone). Most common presenting symptoms were painless lump 41% (n = 229), ‘something else’ 31% (n = 173) and lump increasing in size 30% (n= 166). 31% (n = 44) of bone sarcoma patients presented with bone pain. Younger patients (16-34 years) were more likely to report painful lumps; older patients (85+ years) reported increasing size. Of all patients, 18% (n = 96) presented >6 months after first noting symptoms, 24% of bone sarcoma vs 16% of soft tissue sarcomas; 17% of bone sarcomas waited >1 year. General Practitioners (GP) referred 34% for tests and 33% to hospital specialists. Of all respondents who visited their GP, 9% were treated for another condition, and 18% were told their symptoms were not serious and to come back (9%) or not come back (9%) if symptoms persisted. Of patients attending Accident & Emergency departments, 25% were not treated appropriately; 10% of patients (younger more than older) were treated for another condition.


Delay in presentation is a significant factor, which may adversely impact long-term outcome and quality of life. Additionally, frequent misdiagnosis highlights the low level of suspicion, education and knowledge in primary and secondary healthcare. These data will encourage initiatives to improve awareness among the public and healthcare professionals.

Clinical trial identification

Not applicable

Legal entity responsible for the study

Sarcoma UK: The bone and soft tissue cancer charity


Sarcoma UK: The bone and soft tissue cancer charity


All authors have declared no conflicts of interest.

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