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PriMUS Study Management Group

PriMUS Study Management Group

Overview

An opportunity to join the study management group for the PriMUS study.

  • Monday 22nd May 2017 10:00
  • Public/Patient Representative
  • Influence

Taking Part

This opportunity has already taken place

The date given above is the deadline for applications. Dates and times for the study management group will be confirmed with successful applicants.

Primary care Management of lower Urinary tract Symptoms in men (PriMUS): Development and validation of a diagnostic and decision-making aid.

Lay Summary

More than 10% of older men experience the need to pass urine more frequently than usual and often find their sleep interrupted by having to go to the toilet at night. Some will find that their urine flow rate has become slower, and some will experience loss of bladder control. Such problems are distressing for men and are a common reason why men visit a general practitioner (GP), with over 60,000 attendances yearly across the UK. They firstly need reassurance that they are not suffering from cancer or any other sinister medical condition. GPs follow established procedures when considering signs of cancer or these more serious conditions, but they have no easily available assessment tools to identify other more common causes of lower urinary tract symptoms (LUTS), or to advise men about the best treatment options for symptom relief.

Because of this, men have to be referred to hospital based urology specialists for tests and diagnosis. We aim to establish a practical and accurate decision aid for use by GPs to diagnose the cause of LUTS in men and to assist decisions in determining appropriate person-centred treatment. Successof the study will benefit men with LUTS, general practice and the wider health system by:

  • Reducing waiting times before men are assessed and diagnosed
  • Giving men early access to appropriate treatment plans personalised to them
  • Reducing the number of men needing referral to hospital based urology specialists
  • Early referral of those men with more complex problems to specialist urology services

The study will demonstrate if a set of simple test results can be incorporated into a computer software programme for use by GPs to establish a diagnosis of the cause of LUTS in an individual and therefore guide selection of appropriate treatment options to relieve symptoms. With the help of general practices across the UK, we will recruit 880 men with LUTS into the study. The tests will include men keeping a diary for a few days to record the timing and amount of urine passed, measuring urine flow with a small portable machine, and asking men to complete symptom questionnaires. To assess the performance and accuracy of the tests, all men in the study will also need to have a more complicated test done by a specially trained nurse. This special test is called urodynamics and involves the passing of a thin tube into the bladder through which the bladder is then filled with water. A thin rectal catheter is also needed to control for changes in abdominal pressure. By comparing results of the simple tests with results of urodynamics we will identify which simple tests give best agreement. The top performing simple tests will then be incorporated into development of the decision making aid. The decision aid will be presented to GPs in a format that allows them to enter test results and then get a read out of the diagnosis and recommended treatment. The study will also consider practicalities for both patients and clinical staff in doing the simple tests in the general practice setting, and the ease with which the decision making tool can be used. The study is being run by Cardiff University in collaboration with other groups around the UK.

Aim

Primary care Management of lower Urinary tract Symptoms in men (PriMUS): Development and validation of a diagnostic and decision-making aid.

The PriMUS study (which will run for three years from May 2017) is looking for two male PPI representatives based in the North East of England to join the study management group.

Volunteer Criteria

The study is looking for men over the age of 45 who have experience of urinary symptoms.

Volunteers must also:

  • have good communication and organisational skills
  • be willing to ask questions, discuss and challenge
  • be enthusiastic

It would also be desirable to have previous experience of community engagement activities (paid or unpaid).

What will I be asked to do?

Activity/cost breakdown

1. Review of patient-facing study documents
When: Primarily April 2017, some work until April 2020
Where: Remote
Reimbursement: £25 (short task) per document set (five document sets estimated)

Patient representatives will be asked to review and provide feedback on patient-facing study documents to ensure that language is appropriate and important areas have been addressed. These will include: consent to contact forms, consent forms, patient information sheets and lay-summaries of findings.

2. Study management group meetings
The patient representatives will join the trial management group. This will involve attending trial management group meetings where possible. Meetings will cover activities such as planning data collection, reviewing early findings and planning presentation of results. There will be four face-to-face meetings and monthly 1 hour teleconferences (36 in total) during the study. The two patient representatives can share the monthly teleconferences, so they each call in every other month.

Face-to-face meetings
When: May 2017 to April 2020
Where: Likely in London
Reimbursement: £150 (full day event including travel) plus travel expenses (estimated up to £200) per meeting 

Monthly teleconferences
When:
May 2017 to April 2020
Where:
Remote
Reimbursement:
£25 (short task) per teleconference

3. Recruitment interview schedule review
When: Between May and October 2017
Where: Remote
Reimbursement: £25 (short task)

Patients recruited into this trial will all undergo an invasive test called urodynamics, where small catheters are passed into the bladder and rectum in order to measure bladder pressure during voiding. We plan to interview 9-12 patients (including both study participants and those who declined) to explore their reactions to this test and the study recruitment process, or reasons for declining to take part. This will inform out recruitment strategy going forward. Our patient representatives will review the wording and nature of questions included in the interview schedule and comment on their appropriateness and ability to address the important issues.

4. Consensus workshops support
The aim of this study is to produce a ‘decision aid’ that will allow GPs to identify the most likely cause of patients’ urinary symptoms so that together they can decide on appropriate treatment. This means that a link is required between the diagnosis output by the model and patient management and treatment recommendations. We will hold two consensus workshops (autumn 2017 and autumn 2019) involving patients, urologists and GPs (either all together or separately) to develop these recommendations on the basis of national guidelines.

Design of consensus workshops
When: Summer 2017 and summer 2019
Where: North East (likely Newcastle Hospitals or University)
Reimbursement: £75 (half day event) plus local travel expenses (estimated up to £30) plus £25 (short task)

The patient representatives will meet with members of the study team to plan patient activities within the consensus workshops to ensure that attendees feel comfortable and empowered to contribute. Following the session, the plan will be written up by the study team and patient representatives will be asked to review and provide feedback.

Consensus workshops including pre- and post-briefings
When: Autumn 2017 and autumn 2019
Where: Likely London
Reimbursement: £150 (full day event including travel) plus travel expenses (estimated up to £200) plus £25 (short task)

During the consensus workshops themselves, two patient representatives will meet with patient contributors for 30 minutes before the event to brief and prepare them for the day. They will act as facilitators during the workshops and will also meet with patient contributors for 30 minutes afterwards to collect feedback on the event. Following the event, the findings will be written up by the study team and patient representatives will be asked to review and provide feedback.

When & where?

Exact dates of meetings and workshops will be confirmed with successful applicants.

They will take place in Newcastle and London.

Will I get anything for taking part?

 Travel expenses will be covered. Please see What will I be asked to do section above for other reimbursements.

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Taking Part

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