Nurse-led research into sarcoma may lead to earlier diagnosis

Study into this rare cancer has produced such a wealth of evidence it could lead to swifter diagnosis

Nurse-led research into sarcoma has produced such a wealth of evidence it could lead to swifter diagnosis

Rachel Taylor (second left) and her sarcoma clinical nurse specialist team at University College London
Hospitals NHS Foundation Trust. Picture: Barney Newman

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A nurse leading an interdisciplinary study focusing on improving the care and quality of life for people with sarcoma has won the Excellence in Cancer Research category of the prestigious 2019 RCNi Nurse Awards, the profession’s top accolade.

Rachel Taylor, director of the Centre for Nurse and Midwife Led Research (CNMR) at University College London Hospitals (UCLH) NHS Foundation Trust, is chief investigator and grant holder of the Sarcoma Assessment Measure (SAM) study, which is producing the first patient-reported outcome measure specific to this rare form of cancer.

What the judges said

Cancer Research UK lead research nurse Anne Croudass, one of the 2019 RCNi Nurse Awards Judges, said of Rachel Tayor: ‘It is fantastic to see a nurse heading up this multidisciplinary research project.

‘Dr Taylor is an excellent example of how research and research nurses can make a difference to the experience of people with cancer and their families.’


The 2019 RCNi Excellence in Cancer Research Award is sponsored by Cancer Research UK

Through her work leading BRIGHTLIGHT, a programme of research evaluating teenage and young adult cancer services in England, Dr Taylor got to know the young people with sarcoma on its patient participation group.

The study has produced such a wealth of evidence that researchers believe it could lead to swifter diagnosis, and could improve communication between people with sarcoma and healthcare professionals.

‘This malignancy of connective tissue has more than 100 subtypes, but accounts for just 1% of cancers – although this figure is 20% in young people,’ says Dr Taylor.

Psychosocial effects

‘Not only does sarcoma have a high treatment burden in terms of chemotherapy, but survival is lower than most other cancers, and the incidence of recurrence and metastases is high. In fact, it is not if there is recurrence, but when.

‘When I looked at the research on its psychosocial effects there was nothing, whereas there is a wealth of research on other forms of cancer.

‘This made me wonder: is this because current patient reported outcome measures do not reflect the experiences of these patients?

‘The quality of survival is also important’

Rachel Taylor

‘People with sarcoma do not have the same experience as, say, breast cancer patients, who are discharged when they have finished treatment. There is anxiety, but people with sarcoma are told upfront that there is a high chance of metastases and recurrence.

‘They have typically had a long and traumatic route to diagnosis, with lumps being dismissed as growing pains or cysts.’

Patient experience

Dr Taylor has also seen how hard sarcoma nurse specialists work. ‘All cancer nurse specialists work hard, but the pressure on sarcoma nurses is huge,’ she says.

Rachel Taylor
Rachel Taylor. Picture: Barney Newman

She successfully applied for funding from Sarcoma UK to develop and validate a measure reflecting patient experience, and developed a strategy for maximising its utility in practice.

The project has been through numerous phases using different methods, but has always kept the experiences of people with sarcoma at its heart.

‘Patients were battering down the door to take part,’ says Dr Taylor. ‘The study went out in a newsletter on Friday; by Monday, the inbox was full.’

Despite such enthusiasm, Dr Taylor says, it can be difficult to get funding for psychosocial research, which tends to focus on survival.

‘The quality of survival is also important,’ she says. ‘You have to justify interviewing patients, and people can think you are burdening them. But often they welcome the chance to talk.

‘Often in healthcare we talk to patients because we need them to know or understand something. But patients want to talk too, and this research is our chance to listen.’

Important evidence

The study has already produced important evidence about the experience of patients with sarcoma. ‘We have documented for the first time that people with sarcoma do not identify as cancer patients but as sarcoma patients,’ says Dr Taylor.

‘Not only will we have a measure of quality of life that is specific to sarcoma, we will get a better idea of what interventions will potentially improve experience and outcome.’

It is the richness of the data collected in the initial phase of interviews that is expected to provide opportunities to improve the care of these people.

Alex Donkin
Clinical nurse specialist Alex Donkin (left) with Rachel Taylor. Picture: Barney Newman

‘This study just keeps on giving so much data,’ says Dr Taylor. ‘We do not need to go back and do further interviews because we have evidence for secondary analysis.

‘For example, we have lots of data about the period of time before diagnosis. This vitally important evidence will help us understand patients’ route to diagnosis and identify interventions to facilitate earlier diagnosis.’

Dr Taylor is excited by the possibilities. ‘It is the first time in my 25 years as a nurse that we have data to carry out interventions.

‘This is such a great feeling, but it is thanks to Ana Martins for her commitment and willingness to accommodate patients. Dr Martins carried out in-depth interviews with 121 patients in just five months, which is amazing.’

Raising the profile of sarcoma

Dr Taylor was nominated for the Excellence in Cancer Research award by deputy chief nurse Julie Hogg, her line manager for the CNMR part of her role.

‘Patients were battering down the door to take part’

Rachel Taylor

She describes Dr Taylor as a role model for senior clinical lecturers. ‘I have watched Ms Taylor grow professionally over the past 18 months. She has contributed to the growth of research across the non-medical professions while managing their own research portfolio.’

Dr Taylor is honoured to win the award, saying: ‘I am especially glad that a rare cancer such as sarcoma will be highlighted because it gets too little publicity,’ she says.

‘I hope I can help raise the profile of sarcoma across the country, and the role nurses play in delivering care and research.’

Sarcoma Assessment Measure study recruitment centres

The Sarcoma Assessment Measure (SAM) research programme is recruiting in 15 centres across England and Scotland, largely through the clinical research networks, but includes patients from Wales and Northern Ireland recruited through Sarcoma UK.

Ms Taylor says SAM is the highest-recruiting research programme in sarcoma largely due to the skills of the research nurses and staff involved. She also cites the help of University College London Hospitals NHS Foundation Trust’s sarcoma research nurse Rose Elland: ‘From the outset, she helped identify a pathway that would facilitate recruitment of large numbers of patients in short periods of time without burdening busy caseloads.’

Initial interviews

The team started with a qualitative study involving in-depth interviews with 121 people aged 13-82 to understand living with and beyond a sarcoma diagnosis.

From these interviews the team produced a list of 1,405 individual items reflecting patients’ experience. These were reviewed, duplicates were removed and similar items grouped together, until the team had 395 items.

These items were rated by 250 participants recruited by research nurses in only five months. The team then calculated an impact score based on importance and frequency of responses from 17-89 year olds. The 160 top-scoring impact items were compared with existing patient-reported outcome measures and reduced to 66.

The team then drew on these impact items to compile a content validity questionnaire to be completed by 33 patients and 24 healthcare professionals.

Final checks

The final questionnaire contains 22 items: seven related to physical, ten to emotional, three to social and one to financial well-being, and one related to sexuality.

‘Next we had to check patients could understand the items, answer the questions and to ensure questions were not too sensitive,’ says Dr Taylor.

‘There were only minor changes to four items as we stuck very closely to patients’ words.’

The study closed recruitment to its testing phase with about 750 participants expected to review SAM online.


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