The Bone Cancer Research Trust are today launching the 2020 Patient Survey report, the most comprehensive analysis of presenting symptoms and routes to diagnosis for primary bone cancers & tumours in the UK to date.

The 2020 Patient Survey report is an in-depth analysis of a patient survey which was launched in July as part of the Bone Cancer Awareness Initiative, a collaborative project between the Bone Cancer Research Trust and Children with Cancer UK. The survey collected 739 responses from inside the UK (312) and outside the UK (426) and includes representation of every form of primary bone cancer and tumour.

The report focuses on two main areas:

  1. The time and routes to diagnosis
  2. The range of presenting symptoms across all anatomical locations and forms of primary bone cancer and tumours

Our analysis has found that patients wait, on average, more than 7 months and make 8 visits to multiple healthcare professionals before receiving an accurate diagnosis.

The capture and collation of the broad variety of symptoms has revealed the importance of looking at all the presenting symptoms collectively and not in isolation. Many symptoms of primary bone cancers are vague and can be mistaken for less serious conditions. However, patients rarely experience just one of these and it is the combination of several symptoms that is key to identifying primary bone cancers.

The findings within this report will pave the way for future clinical studies to fully understand delayed diagnosis and the impact this has on patient outcomes.

Our findings suggest that there are significant gaps in knowledge amongst a wide range of healthcare professionals and have identified GPs, physiotherapists, radiologists, A&E doctors, medical students and dentists as key healthcare professionals. Dr Zoe Davison, Head of Research, Information & Support at the Bone Cancer Research Trust said:

We are committed to working with healthcare professionals to provide them with the tools and resources needed to increase their understanding of primary bone cancers and tumours. The 2020 Patient Survey is a comprehensive evidence base on which we will focus our awareness objectives moving forward where we hope to make significant improvements.

From the findings of this research...

We will:

  • Assemble an expert task force to develop training resources and peer-to-peer training opportunities to educate key healthcare professionals.
  • Produce and nationally circulate bespoke educational tools tailored to each specialism, enabling each to recognise presenting symptoms and understand onward referral pathways.
  • Launch public and healthcare professional-targeted campaigns to increase awareness and engagement with our new education resources.

We urge:

  • Healthcare professionals to read this report and engage with the educational tools we will produce and make available.
  • GPs and other healthcare professionals to remember it is the combination of several potentially vague symptoms that can identify primary bone cancer as a differential diagnosis and lead to a timely referral.
  • Healthcare professionals to aim for a diagnosis to be made within 1 month or less for all suspected primary bone cancer cases.
  • Referral of patients with continued pain or other key symptoms, even with a clear X-ray.

We recommend:

  • These findings are used alongside the current NICE guidelines and to inform future versions.
  • That a clinical study is undertaken to understand the reasons for, and the consequences of, delayed diagnosis.

Access the report