Working together to improve earlier diagnosis of sarcoma


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Victoria Vinader1, Victoria Vinader1, Zoe Davison1, Tobias Firth1, Sorrel Bickley2, Bradley Price2
1Bone Cancer Research Trust, 2Sarcoma UK

Abstract

Background

Screening programmes and the use of diagnostic biomarkers have significantly advanced the early detection and diagnosis of cancer. However, these advances remain elusive for sarcoma patients.

The symptoms of soft tissue, bone and gastro-intestinal sarcoma tumours are often mistaken for less serious conditions, resulting in widespread delays and misdiagnoses, negatively impacting outcomes and quality of life.

Method

In 2020, both charities undertook comprehensive patient consultations on the symptoms and diagnostic experiences of sarcoma patients.

The National Sarcoma Survey 2020 by Sarcoma UK focused on the diagnostic and treatment experiences of sarcoma patients, their awareness of the disease before diagnosis and the impact that diagnosis had on their lives.

The Bone Cancer Research Trust carried out their 2020 Patient survey, to gain a deeper understanding of the symptoms of bone tumours and the length and routes of diagnosis for primary bone cancer patients.

The surveys were accessible online and were promoted by the charities’ networks and social media platforms.

Results

The surveys obtained 1,117 and 739 responses from all sarcoma and bone sarcoma patients and their careers.

79% of respondents had not heard of sarcoma before their diagnosis.

Around 30% of patients wait more than 6 months before receiving an accurate sarcoma diagnosis and 17% wait longer than a year.

On average, the total length of diagnosis for primary bone cancer patients was 8 months with 76% of patients first reporting their symptoms to a GP and 11% attending A&E. Patients visited a GP or other healthcare professionals approximately 4 and 8 times respectively, before being referred.

22% of sarcoma respondents were told at their first appointment that their symptoms were not serious and 76% of bone cancer patients were misdiagnosed.

Conclusion

Our findings substantiate the need for an awareness and educational effort, targeting all key healthcare professionals involved in the diagnostic pathway.

The charities are now working together to improve early diagnosis through increasing awareness of sarcoma amongst medical students. These future GPs, radiologists, A&E and orthopaedic doctors are critical in the diagnostic journey of sarcoma patients.

Impact statement

Insight into early diagnosis from sarcoma patients to shape awareness campaign among healthcare professionals.