Tips and tricks learned from the first few months of UPSTREAM recruitment

1.       Who to invite; nearly any man with uncomplicated LUTS. This is very broad, and includes men with voiding LUTS, storage LUTS and nocturia. All these are suitable, since the point of the study is to assess the steps needed in evaluation for coming to a treatment decision.

2.       Screening notes/ letters. In the secretaries’ office, I screened 200 sets of notes in 45 minutes recently. Here’s how;

• Check the patient is male
• Check that LUTS is mentioned in some form (“prostatism”, urgency, dribbling) in the referral letter
• Discard if they’ve had urinary tract cancer, neurological disease, or previous prostate surgery
• Discard if they currently have a catheter; a catheter in the past is not a problem

This process yielded 11 sets of notes for more detailed scrutiny, 10 of whom have been invited to participate

3.       Where to find patients

a)      At point of referral (the best time);

• Identify the letter when it enters the triage process for incoming referral.
• The letter can be diverted to the research clinic, or the clinic run by the PI consultant.

b)      After the patient has been seen in clinic

We have recently sent out some case scenarios, based on actual clinic letters, to show the sort of person we can invite, so do have a look at them. If identified at this point;

• If seen in another consultant’s clinic, the patient could be approached (with that consultant’s permission), and the patient’s care transferred to the PI consultant.
• If the patient was started on an alpha-blocker or antimuscarinic in clinic, ask the consultant’s permission to arrange review in the research / PI consultant clinic in a month’s time (this is compatible with NICE and EAU Guidelines)
• If the patient was started on an alpha-blocker and discharged, you can still invite the patient for follow up review in a month’s time in the research / PI consultant clinic
• Even if the clinic was some time ago, the patient might be considered for the study.

c)       Flows clinic; 

• Patients can be given the information sheet to read while they wait
• Follow up could be arranged in the research / PI consultant’s clinic (with agreement of original consultant)
• Flow tests up to 6 months old are valid as baseline data for UPSTREAM

d)      Urodynamics referrals;

• It’s perhaps a bit late to be approaching men at this stage, but It’s still worth asking, since many men are apprehensive about the test, and may value the chance to join UPSTREAM
• It will be appropriate to get permission of the original consultant to transfer care to the research / PI consultant clinic

e)      Surgical waiting list

• It’s very late to be approaching men at this stage, but perhaps worth asking, since many men are apprehensive about surgery, and if so they will value additional assessment
• Particularly consider approaching them if the man has only just been put on the list, or has been on it for a long time
• Essential to get permission of the original consultant to transfer care to the PI consultant clinic

Some relevant issues;

• If started on finasteride in clinic, I would still suggest arranging review relatively soon, because we’re finding that men are sometimes unhappy, and have not had sufficient discussion. They really appreciate chance for full discussion.
• A man who has significant urgency should still be considered for UPSTREAM. We know that many consultants understandably regard urodynamics as necessary for such patients. However, the reality is that a symptomatic diagnosis from the questionnaires is probably just as informative as a urodynamic diagnosis, and the UPSTREAM study is an excellent chance to gain extra information on this. Accordingly, please do aim to recruit these men; it will probably require transfer of the patient’s care to the PI consultant.
• Patients coming for trial without catheter (TWOC); men who pass their TWOC will be ideal for UPSTREAM. If they fail, they are excluded.
• We have found that some centres have misinterpreted a phrase in the study protocol (“men who may be considering surgery for their voiding LUTS”) as meaning men should have already been listed for surgery as an inclusion criterion. That is wrong, as UPSTREAM is about the diagnostic pathway and the process of treatment decision. Patients are past that stage if they’ve already been listed - they would only become eligible if the listing for surgery was reviewed and potentially changed.