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 NJ, Smith C, Ross JR, Riley J and Judson I. Symptom Burden, Survival and Palliative Care in Advanced Soft Tissue Sarcoma. Sarcoma. 2011.
  • Gough N, Ross JR, Riley J, Judson I, Koffman J. When something is this rare … how do you know bad really is bad…?'-views on prognostic discussions from patients with advanced soft tissue sarcoma. BMJ Support Palliat Care. 2015.
  • Gough N, Koffman J, Ross JR, Riley J, Judson I. Symptom Burden in Advanced Soft-Tissue Sarcoma. J Pain Symptom Manage. March 2017. 53(3):588-597.


  • Gough NJ, Smith C, Ross JR, Riley J, Judson I. Advanced Soft tissue sarcoma: A retrospective evaluation of symptoms, palliative care involvement and overall survival in a sarcoma unit. European Association of Palliative Care Congress. May 2011. Lisbon.
  • Gough NJ, Smith C, Riley J, Ross JR, Judson I. A prognostic score to guide appropriate delivery of first line palliative chemotherapy in those with locally advanced/ metastatic soft tissue sarcoma. European Society of Medical Oncology. September 2012. Vienna. - Winner of best poster, Sarcoma and Melanoma section.
  • Gough NJ, Ross JR, Koffman JK et al. Symptoms and health related Quality of Life in patients receiving first line palliative chemotherapy for advanced Soft tissue sarcoma: a longitudinal study. European Society of Medical Oncology. September 2013. Amsterdam.
  • Gough NJ, Ross JR, Koffman J, Riley J, Judson I. The opinions of patients with advanced soft tissue sarcoma of prognostic discussions. British Sarcoma Group. February 2014. Nottingham.
  • Gough NJ, Ross JR, Koffman J, Riley J, Judson I. Symptom Burden and Oncologist prognostication in advanced soft tissue sarcoma. European Association of Palliative Care. June 2014. Lleida, Spain.


  • Symptomatology in advanced soft tissue sarcoma: A Longitudinal Study. European (EORTC) Sarcoma Group. 2013. Budapest.
  • Health related Quality of Life in Advanced Soft Tissue Sarcoma: Results of a Longitudinal Study. British Sarcoma Group Meeting. 2014. Nottingham.
  • What matters to those with advanced soft tissue sarcoma. SPAEN Conference. November 2014. Amsterdam.
  • Dr Nicholas Gough. A Pilot study investigating Health Related Quality of Life, Symptom burden and Prognostic indicators in advanced Soft Tissue Sarcoma. Sarcoma Voices, Talking Research 13th June 2015, Manchester, UK.
  • When something is rare ‘how do you know bad really is bad?’ Royal Marsden Palliative care update day. 2016. London. 
Project status: