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Join a study group looking to tackle pain

Lay study title: Pain and symptoms in patients with pancreatic cancer

Institution: This study is being led by researchers at the Division of Cancer Studies and Pathology, University of Leeds.

About the study: Patients who are diagnosed with incurable pancreatic cancer may experience pain related to the tumour in the pancreas, which can be severe and difficult to control. This pain may become more troublesome as time goes on and may be accompanied by other symptoms such as poor appetite and feeling sick. We believe that sometimes opportunities to improve pain may not be recognised until it is too late in the patient journey to make a meaningful difference. As a first step in designing future studies, we are planning to carry out an extensive examination of all the published documents regarding pain and pain treatments in patients with pancreatic cancer (this piece of work is called a systematic review of the literature). This will highlight if pain is as big a problem as we imagine. This, in turn, will guide the design of future studies which will assess pain, and treatments for pain, in patients with pancreatic cancer.

Type of opportunity: The researchers would like people affected by pancreatic cancer to take part in a small review group, which will provide insight and advice to the team studying pain and other symptoms in patients with pancreatic cancer. It is intended that the review group would meet intermittently (perhaps every other month) and you will be asked to help the research team by discussing your experiences of pain associated with pancreatic cancer. The research team would also like your support with interpreting the findings of their research and to help them design and direct their future research studies.

When will this opportunity be recruiting/taking place?: The team will be looking for patients and volunteers to join the study group from November 2017 onwards.

What will participants be asked to do?: RIN members will be asked:

  • To comment on the results of the systematic review of the existing literature regarding pain and interventions for pain in patients with pancreatic cancer (lay summaries will be provided)
  • To assist with communication of the results of the systematic review, both locally and nationally to other patients and relatives
  • To assist in the design of future studies to evaluate pain, related symptoms and interventions in this patient group.

Contact would be via email and occasional face to face meetings (or with the possibility of Skype interaction if possible).

Who can take part?: Any interested person with pancreatic cancer or a relative of a person with pancreatic cancer pain. The team are hoping for a group of maybe five to seven patients and relatives.

Who has reviewed the study?: At this stage, the team are looking for input into the literature review, and then further down the line, a clinical trial designed with this in mind.Once a trial has been designed, this will be peer-reviewed by local and national experts in pancreatic cancer. Both Palliative Care and Oncology doctors would be involved.

How will the study benefit people affected by pancreatic cancer?

The team anticipates that with your help, the literature review will demonstrate that pain and pain evolution in patients with pancreatic cancer is not well documented or studies enough up to now, thereby illustrating the need for a high quality research study that evaluates pain over time. It is hoped that this study will then lead to future interventional studies, which ultimately will optimise timely symptom management in this patient group.

What next/who to contact: If you would like to be involved in this study, you can contact Dr Louise Murray or Dr Matthew Mulvey at the Division of Cancer Studies and Pathology, University of Leeds:

E: L.J.Murray@leeds.ac.uk / M.R.Mulvey@leeds.ac.uk