Sarcoma UK ICR test tubes
Principal Investigators: 

Dr Julia Riley, Dr Claire Smith, and Professor Ian Judson

Award Amount: 
2 years

This study looks at the quality of life of patients being treated for advanced sarcoma. Prospective means it looks at patients as they go along, which gives stronger data. This is better than retrospective data which looks at events in the past where memory or uncertainty often makes the information unreliable.

People with locally advanced or sarcoma that has spread or whose sarcoma has have had recurred after surgery may only be eligible for palliative treatment so quality of life becomes the primary concern rather than defeating the sarcoma.

Because the intention is palliation it is important to understand what determines the quality of life in these patients especially when chemotherapy will have side effects. In addition, the study will try to identify markers found in blood tests that might predict prognosis since this might help decisions on which treatment to use. If this is possible  they can avoid chemotherapy in people who will not benefit from it, which would improve their quality of life.

By recruiting patients at different stages right from the first diagnosis of advanced disease through to end of life care, Quality of Life changes in response to treatment and disease progression can be tracked.

People with a diagnosis of locally advanced or metastatic soft tissue sarcoma and not eligible for potentially curative treatment are approached to enter the study.  All treatment is given as usual  by the doctors. All that happens in the research is that the patients are observed. If they agree to join the study patients fill in two questionnaires about their lifestyle and daily activities every three months. They also have a blood test. This carries on for two years or until the patient is too unwell, decides to withdraw or sadly, dies.

This will help the development of clinical practice and also gather valuable data to aid health economic analysis of new treatments.




  • Gough, N. J. et al. Advanced Soft Tissue Sarcoma: a retrospective evaluation of symptoms, palliative care involvement and overall survival in a sarcoma unit. Poster presented at the European Association of Palliative Care Congress. May, 2011. Lisbon, Portugal.
  • Gough, N. J. et al. A prognostic score to guide appropriate delivery of first line palliative chemotherapy in those with locally advanced/metastatic soft tissue sarcoma. Poster presented at the European Society of Medical Oncology. September, 2012. Vienna, Austria.
  • Gough, N. J. et al. Symptoms and health related Quality of Life in patients receiving first line palliative chemotherapy for advanced Soft Tissue sarcoma: a longitudinal study. Poster presented at the European Society of Medical Oncology. September, 2013. Amsterdam, Netherlands.
  • Gough, N. J. et al. The opinions of patients with advanced soft tissue sarcoma of prognostic discussions. Poster presented at the British Sarcoma Group Conference. February, 2014. Nottingham, UK.
  • Gough, N. J. et al. Symptom Burden and Oncologist prognostication in advanced soft tissue sarcoma. Poster presented at the European Association of Palliative Care. June, 2014. Lledia, Spain.


  • Symptomatology in advanced soft tissue sarcoma: a longitudinal study. Presention given at the European Organisation for Research and Treatment of Cancer (EORTC) Sarcoma Group. May, 2013. Budapest, Hungary.
  • Health related Quality of life in advanced Soft Tissue Sarcoma: Results of a Longitudinal Study. Presentation given at the British Sarcoma Group Meeting. February, 2014. Nottingham, UK.
  • What matters to those with advanced soft tissue sarcoma. Presentation given at the SPAEN conference. November, 2014. Amsterdam, Netherlands.
  • Gough, N. A pilot study investigating Health Related Quality of Life, Symptom burden and Prognostic indicators in advances Soft Tissue Sarcoma. Presentation given at Sarcoma UK’s Talking Research Day. June, 2015. Manchester, UK.
  • When something is rare ‘how do you know bad really is bad?’ Presentation given at the Royal Marsden Palliative Care Update Day. October, 2016. London, UK.


  • The Sarcoma UK funds were partially used to enable the research work of MD student Nicolas Gough
  • Gough, N. J. et al. were awarded Best Poster in the Sarcoma and Melanoma Section at the 2011 European Society of Medical Oncology in Vienna. 
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