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Understanding the support needs of people affected by pancreatic cancer

Pancreatic Cancer UK has commissioned Oxford Brookes University and Picker Institute Europe, to lead a study hoping to understand the information and support needs of people affected by pancreatic cancer

Supporting more people to take on pancreatic cancer

Pancreatic Cancer UK has been providing advice and support to people affected by pancreatic cancer for eight years. Our Support Line is a lifeline for thousands of patients, families and friends, and in 2016-17 we provided support and information to 1,054 people, up from 899 in the previous year. Through our services we are aware that people affected by pancreatic cancer often have a significant need for good supportive care to help them manage symptoms, side effects of treatments and the emotional impact of the disease. We are aware that these needs are not always being met through the care they currently receive, and research suggest that this can have a significant impact on outcomes and quality of life.[1]

From patients who are experiencing symptoms or have just received a diagnosis, to those undergoing treatment or who are in recovery, understanding more about the support needs of those with pancreatic cancer is vital. We know there can be a variation in the quality of care between the cancers – for example in 2015 people with pancreatic cancer were 10% less likely to feel that they’d been given news of their diagnosis in a sensitive way, and 12% less likely to feel they had been given easy to understand information about their condition, when compared with other cancers.[2] This study will help us to ensure that health services and charities are working to meet the respective needs of people with pancreatic cancer and to help them live as well as they can for as long as they can, by receiving quality care from the moment of their diagnosis. Studies in other cancers have shown that good quality supportive care provided earlier can have a benefit on quality of life and survival outcomes.[3]

That’s why Pancreatic Cancer UK has asked experts at Oxford Brookes University and Picker Institute Europe to design and implement a survey and questionnaire study to understand the experiences of patients and families, using our services and also services provided by other organisations, to identify any areas of unmet need. The findings will help Pancreatic Cancer UK to improve the information and support we provide and, and help us drive improvements in the quality of care received by patients using any service across the UK.

No stone left unturned

The study will be a comprehensive exploration of how patients feel their needs are addressed and it will allow patients to record contrasting experiences of care and support. In designing the questionnaire, the study team will take a back-to-basics approach, scoping the current literature and looking at the best ways to measure patient support, before developing a questionnaire to help patients convey their experiences and needs.

To ensure that the questionnaire will produce robust results, the team will use a method called ‘cognitive testing’ to develop the survey questions. Cognitive testing involves consulting with a small group of 5-8 patients, to rigorously assess the question design to reflect all types of care and different patient experience, in the hope of aiding the survey to produce clear and useful results. This questionnaire will then be launched as a UK-wide online and clinic-based patient survey in Autumn 2017.

Fundamentally the study will aim to:

  • Understand the existing and unmet supportive care needs of people diagnosed with pancreatic cancer
  • Understand more about the experiences of those with pancreatic cancer
  • Understand what is good, and could maybe be improved, when patients have used our support services
  • Understand what patients feel is the attitude of healthcare professionals towards their condition
  • Provide information to help us make recommendations for future improvements to the information and supportive care provided by the health service to those with pancreatic cancer
  • Inform the development of information and service provision by Pancreatic Cancer UK.

After a sufficient number of responses to give solid evidence have been gathered, the team will analyse the results and publish an important report which will be crucial in helping Pancreatic Cancer UK ensure we are delivering the care that patients need now and in the future.

Introducing the study team

Elia Watson

The study will be led by Professor Eila Watson (left), who is Professor of Supportive Cancer Care at Oxford Brookes University. She is an experienced health services researcher and has conducted a wide range of cancer survivorship research studies over the past 15 years, including a number of studies which have explored unmet needs in patients and carers.  

She has recently researched support provision for people affected by a study looking at quality of life and unmet needs in men with prostate cancer, as well leading a study which explored the needs of long-term cancer survivors and their partners.

Joining her to develop the survey will be Dr Jo Brett (below right), Senior Research Fellow at Oxford Brookes University. Dr Brett has over 20 years’ experience in conducting research studies in different areas of health and social care, particularly in cancer services.Jo Brett

Together they will be working with Picker Institute Europe, an independent healthcare research charity with unrivalled experience in measuring the quality of patients' care. They develop and implement surveys and other forms of patient and public feedback methods throughout the healthcare sector, including NHS Trusts, private hospitals, professional bodies, government and voluntary organisations.



For more information on this needs and experience survey, please contact Pancreatic Cancer UK’s Research and Services teams on research@pancreaticcancer.org.uk.

[1] Psychooncology. 2016. A tsunami of unmet needs: pancreatic and ampullary cancer patients' supportive care needs and use of community and allied health services. [ONLINE] Available at: http://onlinelibrary.wiley.com/wol1/doi/10.1002/pon.3887/full. [Accessed 28 September 2017].

[2] National Cancer Patient Experience Survey. 2015. 2015 Reports. [ONLINE] Available at: http://www.ncpes.co.uk/index.php/reports/2015-reports. [Accessed 28 September 2017].

[3] NEJM. 2017. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. [ONLINE] Available at: http://www.nejm.org/doi/full/10.1056/NEJMoa1000678. [Accessed 29 September 2017].