Sarcoma: a tale of two narratives?

Published on March 21, 2018

February has been Sarcoma Month for the BRIGHTLIGHT team. At the beginning of the month Rachel was invited to present at the Sarcoma Patient Euronet (SPAEN) Annual meeting and Ana, Rachel, Jeremy, Lesley Storey (Queen’s University Belfast) and Craig Gerrand (Royal National Orthopaedic Hospital) all had a presence at the British Sarcoma Group (BSG) Annual meeting at the end of the month. The first was to patient advocates and the latter to healthcare professionals. When we reflect on this month’s experience we have become aware of an interesting variation in perspective of our study developing a patient-reported outcome measure (PROMs) specific for patients with sarcoma.


Patient experience is central to evaluating quality of care in the NHS1 and Government policy encourages the use of PROMs to facilitate patient-clinician communication2. PROMS that include issues affecting everyday quality of life are needed in order to identify the concerns and unmet needs of patients with sarcoma within routine care. Using PROMs also improves assessment of undisclosed concerns to enable agenda setting to be directed by patients3. The essential component of introducing PROMs into a care pathway is choosing the appropriate questionnaires. While there are numerous generic cancer PROMs, the only sarcoma-specific PROM focuses on physical function and therefore captures very little of the psychosocial impact of the disease. This indicates that there is potentially a need for a PROM that reflects both the physical and psychosocial impact of disease that can be used with patients with sarcoma.


This is where we were successful in getting funding from Sarcoma UK to develop SAM – a Sarcoma Assessment Measure. This is being developed using standard outcome measure methodology but the key part of this study has been to understand patient’s experience. When we developed the BRIGHTLIGHT Survey there was a lot of evidence already available so we only needed to do a single workshop to fill the gap in the evidence (available on our resources pages, or the direct links to the published papers are here: Taylor et al. 2013 and Fern et al. 2013). When we looked in the literature we found there was very little descriptive evidence (qualitative studies) on the experiences of patients with sarcoma.


Ana started SAM in February 2017 and conducted interviews and focus groups with 121 patients from across the UK. We have done the analysis to provide the foundation of the questionnaire but we now want to understand patient experience in more depth. We think this will be a valuable resource for the sarcoma professional community as it may provide direction for service improvement and delivery.


This brings us back to our reflection of last month’s conference attendances. We were totally overwhelmed by the response from participants at the SPAEN conference. They wanted to talk about the study, how they could take part and to know more about our understanding of patients experiences of sarcoma. Contrary to the SPAEN conference, at BSG professionals shared their concerns about the use of patient reported outcome measures in practice. Professionals’ main concerns focused on the heterogeneity of the group of patients with sarcoma (is there a measure that can cover it?), the challenges of using a measure in their day to day practice (time, technology challenges; ‘what if you identify needs and potentially do not have resources to support patients?’), and understanding the role of SAM and the planned development of an ‘EORTC’ measure (European Organisation for the Research and Treatment of Cancer). The presentations and workshops on quality of life at the BSG show there is an increasing recognition of the need to include this type of measure as an outcome measure in Clinical Trials (for example, the information about the impact on their quality of life can support patients deciding if they want to take part in a clinical trial). 


What can we conclude from the different response from advocates to those of healthcare professionals?

-Do we need yet another outcome measure? Well we can’t say either way until we understand patient experience, identify issue that are important to them, which cause them most worry and determine whether existing measures actually capture this.

-Patient advocates were very positive about having something to direct communication and enhance care; however, scepticism was expressed by some healthcare professionals that it was needed or would be useful for informing care – in fairness, there were those who thought it would be helpful.

-Our phase 3 is about developing a strategy to optimise the utilisation of SAM into practice. Our experience last month has given us something to think about – how we need to bridge between perceptions of patients and perceptions of healthcare professionals.


We are overwhelmed by the positive response to SAM. Patients and professionals acknowledge the need for a sarcoma specific measure; however there are challenges in clinical practice that need to be considered, so that patients’ reported outcome measures can be used to improve patients’ experiences.



1Department of Health. Equity and excellence: Liberating the NHS. UK: The Stationery Office Ltd; 2010

2Snyder CF, Aaronson NK, Choucair AK et al. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Quality of Life Research, doi: 10.1007/s11136-011-0054-x

3Ghazali N, Rogers SN. Identifying Undisclosed Concerns and needs using the Patient Concerns Inventory (PCI). Oncology News 2012; 6: 195-198.