How surgeons and patients think about post-surgical incontinence

We are coming to the conclusion that there is a deep divide between how some surgeons think about post-surgical incontinence following radical prostatectomy for their prostate cancer and how patients may think about such incontinence when defined by exactly the same set of clinical symptoms and quality of life issues.

A recent article by Martin et al. (available on line in the Journal of Urology) begins as follows:

Incontinence after radical prostatectomy is common yet poorly defined in the current literature. We aimed to accurately characterize incontinence after robot-assisted radical prostatectomy to achieve improved preoperative patient counseling.

It concludes with this statement:

Despite patient concerns of incontinence after prostatectomy there is little patient reported interference with quality of life. Of patients 93% are not significantly affected by incontinence.

So here is what Martin and his colleagues actually did.

They sent a questionnaire to all of the first 600 patients who were treated with robot-assisted laparoscopic prostatectomy (RALP) at the Mayo Clinic in Phoenix, Arizona, between March 2004 and September 2007. The patients were specifically asked questions about their level of continence and its impact on their quality of life. For those patients who responded that they were anything less than 100 percent continent (zero pad use and no leakage whatsoever), there were additional detailed questions about all sorts of factors that might be affecting continence and its social and emotional impact. We have no doubt whatsoever that this was a well-constructed set of survey questions.

And here is what Martin and his colleagues report as the actual major results of their survey:

  • 408/600 patients (68 percent) returned completed survey forms.
  • Time from surgery to return of survey ranged from 2.5 months to 4 years.
  • There appears to have been little variation between baseline data regarding the survey respondents and the non-respondents.
  • Of the 315 men who responded to the survey and who were at least 12 months post-surgery
    • 261/315 (83 percent) were “continent” as defined by use of 0 or 1 pad per day.
    • 246/315 (78 percent) were “continent” as defined by use of 0 pads per day.
    • 82/315 (only 26 percent) stated that they had complete continence and never leaked.
    • Only 21/315 (6.6 percent) “reported significant bother.”

However, Martin et al. go on to report a wide range of additional details:

  • 19.8 percent of patients who claimed they were continent stated that they leaked before reaching a bathroom (as compared to 20.0 percent of patients who stated that they were incontinent).
  • 10 percent of incontinent patients were “significantly affected in physical activity.”
  • 50 percent of incontinent patients “had some degree of depression and anxiety about leakage.”
  • About 30 percent of patients reported “some effect on the partner relationship.”
  • 40 percent of patients reported “an effect on sex life.”
  • 35 percent of patients reported interference with sleep.
  • 51 percent of patients reported the occasional need to change clothes due to leakage.

These results do not sound to us like “little patient reported interference with quality of life.”

What we are seeing here is that although patients may claim to be continent on the basis of not needing to use pads or using only a “security pad,” there is actually a very high level of concern over living with the ongoing post-surgical risk of incontinence associated with things like physical activities, coughing, sneezing, and other very normal functions. On the one hand, patients want to “feel” that they have recovered a high level of continence and so their answers to survey questions initially reflect that. On the other hand, the reality of living with the fact that all sorts of day-to-day factors remind them that they are not as continent as they would like to be is a really serious issue, because the truth is that they are not completely continent. (As shown above, 74 percent of patients do not, in fact, have complete continence.)

Unfortunately, the clinical perception of continence and the socio-functional perception of being not quite fully continent are not well correlated, so that Martin and his colleagues are able to draw the conclusion that 93 percent of their patients were “not significantly affected by incontinence.” Our conclusion would be that actually a far higher percentage of patients were significantly affected by incontinence but had a hard time acknowledging just how much they had been affected by this problem.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: