PPI panel

Urology research study seeks male patients to join a patient ‘service user’ panel; the UPSTREAM study

UPSTREAM is a study for men who have bothersome urinary symptoms (e.g. difficultly passing urine) and are seeking further treatment, which may include the possibility of surgery. For some men, urinary symptoms may be because an enlarged prostate gland (which sits around the base of the bladder) narrows the bladder outlet, or it may be because the bladder becomes less able to contract. There are various possible treatments, e.g. prostate surgery. However, choosing the treatment depends on working out what is causing the symptoms. For example, prostate surgery may not be sensible if the prostate is normal, and the cause of the symptoms is actually the bladder.

A standard diagnostic assessment (procedure) called ‘urodynamics’ can measure bladder and abdominal pressures, as well as bladder outlet pressures. This can be used to decide about bladder function and whether it may contribute to a patient’s urinary symptoms. Thus, it could be a useful assessment to select the most appropriate treatment for a man’s symptoms. However, some doctors feel that all the necessary information can be gained from other tests. There has been no research to say whether urodynamics is essential for deciding the cause of a man’s symptoms. The UPSTREAM trial is designed to establish this. 

Men who are willing to take part are allocated by chance (randomisation) to receive either: a) “usual care”, which includes completing a questionnaire about your symptoms (IPSS), a bladder diary, a physical examination, and a urinary flow test; or b) “usual care plus urodynamics assessment”. 

We are looking for at least three male patients to join a local Patient and Public Involvement (PPI) panel (advisory group) for the UPSTREAM study, and one of them to also be an independent member of the Trial Steering Committee (TSC).

PPI panel: Over the next 30 months we aim to meet about once every three months at Southmead Hospital to discuss the study. The study started in April 2014, so we would discuss ongoing progress and development and eventually the dissemination of our findings. We may also ask you to look at small amounts of written material, so that we can be confident that everything is easily understandable for people potentially joining the study, and that men taking part in the study are not asked to do more than seems reasonable. Travel expenses and time involved attending meetings and reading materials would be reimbursed by the research budget.

TSC member: We would also like one person to join the Trial Steering Committee (TSC) as an independent patient representative. The TSC is a smaller group of people who formally monitor and supervise the progress of the trial. The TSC meets twice a year (once in person [London], and another via teleconference). Travel expenses and time involved attending meetings and reading materials would be reimbursed by the research budget.

Contact details

If you are interested in being involved, or would like to find out more information, please contact Dr Amanda Lewis, UPSTREAM Trial Manager. Email: amanda.lewis@bristol.ac.uk; telephone: 0117 331 3907 (please leave a voicemail if Dr Lewis is not available when you call; she will respond at the earliest opportunity).

Trial website: http://www.bristol.ac.uk/social-community-medicine/projects/upstream/

 

Author details:
Dr Amanda Lewis, UPSTREAM Trial Manager
School of Social and Community Medicine, University of Bristol

Mr Marcus Drake, Urology Consultant and UPSTREAM Chief Investigator
Southmead Hospital, North Bristol NHS Trust

Funding Acknowledgement
This project was funded by the National Institute for Health Research HTA programme (project number 12/140/01).

Department of Health Disclaimer
The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HTA programme, NIHR, NHS or the Department of Health. 

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