Normalizing overactive bladder through patient education

Overactive bladder (OAB) is one of the most common urologic conditions, and yet patients still feel stigmatized when managing and receiving treatment for their urge urinary incontinence.

In this interview, Alexandra Rogers, MD, discusses how urologists can help patients with OAB feel normal. Specifically, she emphasizes the many patients with this condition who are reluctant to receive care, which is why it is important for clinicians to counsel, educate, and support them through the management process. Dr Rogers is a urologist who specializes in incontinence at Sansum Clinic in Santa Barbara, California.

What are the stigmas associated with overactive bladder?

OAB is one huge stigma where women [are] shameful, they stay silent, [and] they cope with [this condition]. Unlike other female conditions, like vaginal atrophy, urinary tract infections, wrinkles, hot flashes, [or] breast health, it's something culturally where we're having minimal conversation about it because there is so much stigma surrounding it. Ladies come in to see us and they say, "I didn't do my Kegels," or "It's just part of aging. I should wear these costly, polluting, uncomfortable pads and Depends." This results in disabling anxiety, helplessness, and social isolation.

What's crazy is that [Female Pelvic Medicine & Reconstructive Surgery] just created this article1 that [Urology Times®] profiled last month,2 where 62% of women have urinary incontinence and, on some level, 53% have urge urinary incontinence between pure urge incontinence vs mixed urinary incontinence. So, it is staggering that over half of women have wet OAB, yet few are making it to professionals to get help in the numbers that [are necessary] to actually move the needle. I found when they finally come and see one of us, they say, "Well, I have leakage," and they have no awareness about what the leakage is. I'll say, "Is it leakage [where] you jump up and down and leak, or is it you pull your car into the driveway, and you can't make it in time? Which one bothers you more?" They say, "The leakage." So, we have such an enormous potential to improve [by counseling:] "Why are you leaking? It is very common. There are ways to get help, and it should not be so stigmatized." Beyond that, they may think, "Well, someone put me on a medication years ago, and it caused me dry mouth or constipation or made me a little woozy, so I stopped taking it," and they think that's the only option. Now, we have more OAB medications with fewer side effects, third-line treatments, and therapies on the horizon that we're excited about. So, this current maze that women are in is full of roadblocks. We really need to educate women to get rid of the stigma, we need to involve [primary care physicians (PCPs)] so they know to send them [to us], and so that we make it normalized and give hope that there can be improvement, because we [have] to end this purgatory. We need to improve the fact that 75% of these patients are untreated [or] unmanaged and frustrated.

How do these stigmas impact the management of patients with this condition?

[For] this dark, dirty, silent condition, [patients] not making it to incontinence specialists, so they're not getting to someone that can help them. That hinders management just in itself, and then once they're even getting to us, we often have a very high attrition. There's only perhaps a 3% penetration of third lines—a little higher if you're really devoted to offering an OAB toolbox to patients, and the adherence with these can be very poor. So, then we're back to bathroom mapping, where patients know every Starbucks on a long drive to come see us, they know how to order their incontinence products secretly on Amazon, they're wearing dark clothes. They're [also] avoiding relations because a lot of ladies with overactive bladder leak during sex—it really is a couple's disease—they're attempting to perform physical therapy on their own, even though perhaps no one's even taught them how to do a Kegel nor even performed an exam, and they're restricting their fluids significantly. Some of the most horrific stories ladies tell me [are], "I was on a prop plane in Alaska and had to urinate in a Yeti cooler because that was my only option," [or] "I'm wearing three quarter length jackets, like all the female politicians so my bottom is covered," [or] "I've had to buy a new change of clothes at Target when I had an accident." I think the pandemic really heightened some of this with bathrooms being closed and social isolation got a lot worse. In addition, we had a lot of weight gain [and] anxiety during the pandemic, so I think this condition is only going to go up in prevalence. My patients want to start living again—they're getting vaccinated, boosted. They want to fly across the country to [a] wedding, they want to go out and shop, and they really need help now more than ever.

On a larger level with the impact of this, it makes patients miss work, [there is] higher unemployment, [and there are] more disability claims. We have that data, and we spend more on these patients—anywhere from 1.5 to 2.5 times more—in health care expenses. It's roughly an $80 billion industry. And finally, it's an environmental crisis, where [in] landfills we're surpassing baby diapers with adult incontinence products, which is frightening. [Going] back to the question [of] how these stigmas impact the management of these patients, I think it hinders them from getting to us. And perhaps, if we are not really open about this shared decision-making long-term relationship going forward and trying to get [them] better, they don't come back to us because they maybe only speak up once. Half of patients won't say anything to their health care professional, and only 44% of professionals are asking, right? So, of course, that stigma is inherently contributing to the management when most ladies, on average, wait 3 years to ever see a professional about this.

What are some current and future innovations in this space that will help patients overcome these stigmas?

We've certainly come a long way since 1975, when oxybutynin/ditropan was approved. We have added beta agonists to the toolbox that certainly have a safer profile. We need access to these newer beta agonists given the American Urogynecologic Society 2021 Clinical consensus statement about the Association of anticholinergic medication use and cognitive risk in women with overactive bladder.3 Women over 70 shouldn't be prescribed these meds was advised by this statement, which is very powerful in counseling patients for a chronic condition. In regards to third-line [therapies], we still have a long way to go. When we look at the data, we have a very high attrition: 90% fourth visit for the general urologist/general physician [and] 84% for what was formerly called FPMRS [and] now [called] urogynecologists. Those fellowship-trained urologists and urogynecologists [are] extremely well versed in what these are. They want to take care of their patients, so even when they explain these options, they're still often having low penetration rates. So, I think there's a lot of room for improvement, but there's not 'one size fits all' with these therapies. We should be giving this menu, going through the toolbox, [and] seeing what fits.

With our current treatments, I think Urology Times® partnered really nicely with Jason Kim[, MD, and] Anjali Kapur[, MD], in a recent article [to discuss] really exciting data.4 They gave a 6-minute video to their patients on risk-benefits of different third lines. What was shocking is that 38% said they were interested in Botox for its long-lasting effects, more in the older age group—over 65—which is a predominant age group in my practice. [For percutaneous tibial nerve stimulation (PTNS)], 37% said [they were] interested in that because there's no surgery [and] no complications. [This response was often coming from] more of a younger age—less than 64. And then [for] sacral neuromodulation, 13% were interested because of long relief. So, I find there's this disconnect, where, as Dr Kim said, only 13% said, "I'm not interested in any of these," yet we usually have 75% untreated [with] 3% penetration. Obviously, people that are very devoted this space can get that number to 16%, 20%, 25%, 30%, 40% if an OAB menu is aggressively utilized. So, we need to work on where this disconnect [happens], [what] the barriers [are] to actually getting to that third-line treatment, and we need to continue to refine the current therapies and expand the toolbox.

I think there's a lot of exciting OAB therapies on the horizon. I'm intrigued by Urovant’s URO-902 gene therapy injection, which may have a different side effect profile than Botox injections. I'm following saphenous transcutaneous home stimulation, knowing that we have reasonable data coming out of more socialized countries for its use, given its low cost. I'm excited about advances in primary cell sacral neuromodulation with nothing for a patient to charge at all. Axonics is close to that which is a huge leap from SNM offerings prior to the fall of 2019, which is very exciting. Reducing patient device management is always going to be a good thing and a completely chargeless implant will be an ideal SNM device for sacral candidates.

And then [another area of interest includes] the various future tibial implant procedures on the horizon [that are] getting FDA approval sooner than later, where [a patient] would avoid surgery, and for in some cases avoid any patient device management with automatic intermittent stimulation for years. I think women that suffer from this really have their heyday pending, like UroLift for BPH, where we somehow fill that gap that we clearly have in caring for these patients. I hope for the Bulkamid effect that I've seen [take] off for stress urinary incontinence, where I have endless ladies to say 'yes' to Bulkamid. They are saying 'no' to a mesh sling after reviewing that as an option. Bulkamid is understandable, it's low risk, can be immediately offered, has accpetable efficacy, and it's low burden. So, I'm hoping we can craft and cultivate more things in the OAB toolbox to get us to treatments like this one which has been very pandemic friendly.

What is the urologist’s role in destigmatizing urine leakage in women?

We have to put ourselves out there to support the primary care doctors. They're getting swallowed by all of the pressure and constraints of COVID and telemedicine, so we need to be very vocal that we are staying on top of these advances [and] that we are committed to offering all of these therapy options. [We need to] encourage them to screen for it because we're never [going to] get anywhere if women aren't speaking up and they’re not asking about it commonly. I think [we should do] as much as we can do to greenlight the path of, "Keep sending patients. We're trying to offer them everything. Stay on top of this," but try and take the burden and load off of them. As we know, even with medications, 80% will stop them at 1 year, whether it's intolerable side effects, poor efficacy or cost/prior authorization issues. We need to take that access burden on our plate because I think it's very hard for them to take that on with [the] laundry list of things they're trying to accomplish in a Medicare wellness visit.

For patients, we really need to normalize [and] get the epidemiology out there, [where patients can realize], "Oh, half of women have this. This is something I can talk about. There is somewhere that I can get help." [We should] try and reduce that maze and increase awareness of therapy options. Women walk into my office, and they say, "I didn't know there was Botox. Acupuncture? Well, I'm interested in that," or "Wow, there's a surgical pacemaker for my backside? Who knew?" [or] "There are safe meds that aren't drying that I couldn't tolerate. I'm so glad there are all these options." People just have no clue, so I'm a big believer in OAB menus. I send out a link to [my website Bladder Boutique] days before the visit, so that I can encourage women to learn what their leakage is and start marinating on what they might be interested in with therapies. I can't tell you how encouraged [I've been] since I've been doing that. I get so excited when they fill out their patient intake form with me and they write down that they have overactive bladder. I'm like, "How do you know that term? That's so exciting," considering many patients do no know what they have and how it can be improved. And so, we're trying to chip away at why you have “the leakage." They're don't know where to go with that [or] how to get better. We need to lead the charge to improve access, reduce barriers, and work together to get these patients to therapy.

Is there anything else you feel our audience should know about this topic?

Continue to talk openly about all the therapies, embrace novel technologies if you think they might fit in to treating your patients, and, we can really work together to expand choices for patients, given the astounding incidence [and] poor penetration. I think we can take this mission and make it possible, fight the high attrition [and] the poor third-line penetration, and low-adherence therapies. Just keep expanding the awareness, which [will improve] self-diagnosis by patients, help them navigate to an incontinent specialist if the PCPs are struggling to do that with everything going on in medicine, offer a robust toolbox, and execute a higher penetration rate by giving a great menu. Hopefully, in the future, we just keep checking more boxes for patient needs as we're seeing in data coming out about what patients are looking for. It's a really exciting time. It's such a privilege to be a part of this space now vs where it was 5, 10 years [ago]. We have to get better because if we don't, we're going to have such an environmental issue with all these pads being tossed in landfills. So, we really have no choice but to keep trying to improve and help our patients.

References

1. Patel UJ, MD, Godecker AL, Giles DL, Brown HW. Updated prevalence of urinary incontinence in women. Female Pelvic Med Reconstr Surg. Published online January 12, 2022. doi:10.1097/SPV.0000000000001127

2. Hart J. The current state of urinary incontinence among US women. Urology Times®. February 3, 2022. Accessed February 14, 2022. https://www.urologytimes.com/view/the-current-state-of-urinary-incontinence-among-us-women

3. Clinical consensus statement: association of anticholinergic medication use and cognition in women with overactive bladder. Female Pelvic Med Reconstr Surg. 2021;27(2):69-71. doi:10.1097/SPV.0000000000001008

4. Hart J. Why do patients prefer some OAB third-line therapies over others? Urology Times®. February 3, 2022. Accessed February 14, 2022. https://www.urologytimes.com/view/why-do-patients-prefer-some-oab-third-line-therapies-over-others