E82: The Social Domain of Pap Smears

Katie: Welcome back to the "7 Domains of Women's Health." Today, we're diving into the social domain of Pap smears, and in particular, today, we're going to talk a lot about HPV vaccination.

I'm Katie Ward. I'm a professor at the College of Nursing at the University of Utah and a practicing women's health nurse practitioner. And I'm flying solo today. Dr. Kirtly Jones will be back with us in the next episodes.

So I've been practicing long enough to remember a time when we didn't know that HPV was what caused cervical cancer. Researchers started focusing on that link really in the '80s, but we didn't have the proof that we needed for sure until the '90s.

And so I remember giving lectures where I had to lay out a lot of evidence about how we knew that a virus could actually cause a cancer and that HPV, in particular, caused cervical cancer. So that was a major shift in our understanding. Really, it was earth-shaking. And along with that knowledge came some complicated feelings that cancer later in life could be caused by intimate contact years before.

I also remember back when we first got the HPV vaccine. When it first came out, we talked about that it was going to take probably 20 years to really see the effect of vaccinating people. And that's because cervical cancer is slow to develop. All HPV cancers are actually quite slow to develop. And I think that's been one of the reasons that acceptance of the vaccine has been low, is that you don't really get an immediate effect.

But here's the thing, it's been 20 years now. That vaccine came out in 2006, and so, right on time, we're starting to get emerging evidence about how well the vaccine really works.

In fact, just this week, a report came out from the CDC. That's the Centers for Disease Control. And that showed that, among screened women ages 20 to 24, so this is a cohort who is mostly to have been vaccinated, there was a 79% decrease in cervical precancerous lesions in that window of time between 2008 and 2022, after we implemented vaccines, and also an 80% decrease in higher grade precancerous CIN3 in that same period.

And then if we looked out to a little bit older women, those that were 25 to 29, and the higher grade precancerous lesions, we saw a decrease in those by about 40%. That age group was a little more likely to have people that did not get vaccinated.

So this CDC report wasn't looking specifically at vaccinated people. They were looking at five states and what's the incidence of these pre-cancer lesions. And we're really starting to see a dramatic drop.

But there's even better news from Scotland, another study, also just out this week, where they did actually link medical records. So they looked at people that got even just one dose of the vaccine prior to age 13. And in that group, there have been no cases of cervical cancer in the 20-year follow-up.

So I think we are really hitting that 20-year milestone where we're going to start to really be able to see the impact of getting an HPV vaccine. And I think that's really exciting.

I can certainly tell you, in my clinical practice, I am seeing way less genital warts than I ever used to. And so that's another metric that I have that the vaccine is really having an impact.

So I'm one healthcare provider dealing with people one at a time, and sometimes I'm having to tell them that they have a cancerous lesion or a lesion that could become cancerous. But that's a one-on-one conversation, and what we want to get into today is the whole social domain. That's our topic today, the social domain of women's health and the social domain of Pap smears.

That social domain is really looking at the influences that we experience in our families and in our communities and in our health systems.

And so when I said I'm flying solo today, that wasn't really true. With me today is one of my colleagues from the College of Nursing.

Dr. Deanna Kepka is a researcher who looks at cancer prevention on a social scale. Deanna has a master's in public health and a Ph.D. in health services research. She has a joint appointment in the College of Nursing and at Huntsman Cancer Institute, and she leads the Mountain West HPV Vaccination Coalition, and she's also a member of the Cancer Control and Population Sciences research group.

Her research is focused on helping us understand the social factors that influence whether people get the HPV vaccine or not, and some newer research on other cancer prevention as well.

Katie: So, Deanna, welcome. It's really fun to get to talk to you in this capacity, and thank you for the work that you do. Do you want to start by telling us a little bit about how you got into this area, specifically?

Deanna: So thank you so much for the invitation, Katie. I enjoy being here. I started working in this area around the time when the HPV vaccine was approved in 2006. At that time, I was at the University of Washington in Seattle, working on my Ph.D. in health services research.

I have always had a passion for sexual health. That came about during my time as a Peace Corps volunteer, when I worked in HIV/AIDS and had a desire to confront that stigma that we have seen impacting people's access to quality healthcare, people preventing sexually transmitted infections.

And that stigma ignited my desire to want to fight for HPV prevention, and that's because, at that time, this vaccine was just approved and recommended for girls, and it seemed like the perfect opportunity to improve cancer prevention through preventing the most common sexually transmitted infection through vaccination.

So I love that there was a solution to the problem, and I've worked the last 15, 20 years on trying to get people to embrace that solution.

Katie: And you mentioned that when it was first introduced, it was only approved for girls. But we've now shown that it has benefits in both men and women. Do you think HPV is still seen as just a women's issue? And does gendered perception impact our vaccination rates for different groups?

Deanna: I think not amongst all communities, but some communities and among some parents, there's a lack of awareness of HPV-related male cancers.

It was approved for boys in 2011, so it has been available for boys for quite a while, but yet, in Utah and across the Mountain West, we see lower HPV vaccination rates among boys compared to girls. And I think that's largely due to the lack of knowledge and understanding around HPV-related cancers that occur in men.

And so HPV oropharyngeal, cancer of the back of the throat, is most commonly caused by HPV, and it has a higher incidence in the U.S. than cervical cancer. The most common demographic group to have that type of cancer are white men, and not a lot of people know that.

Katie: Right. Yeah, I feel like I encounter that a lot, that people haven't even heard that they can get their boys vaccinated or that they're doing something that protects their health. It's not just their partners. So that's an interesting . . . I think it still just does have that sort of gendered perception around it.

Deanna: And it's not just HPV oropharyngeal. There's also penile cancer and anal cancer that are caused by HPV.

Katie: Yeah. So still more education to do, for sure.

I know your research has sort of extensively examined HPV vaccine hesitancy among different populations. What do you think are the most important or most significant social factors that contribute to that hesitancy?

Deanna: I think it brings me back to the start of our conversation, where stigma can be such a barrier, stigma related to sexual health and sexual interactions. Reframing the vaccine as a cancer prevention vaccine has been very effective on improving HPV vaccination rates.

So I think the assumptions that people make about their child's future sexual experiences and who their partners may be can limit their enthusiasm for the HPV vaccine and thinking, "Maybe it's not important for my kid." But reframing it as an opportunity to prevent HPV-related cancers.

In the U.S., we have 37,000-plus HPV-related cancers each year, and so we can prevent those cancers with this vaccine and the pre-cancers. So if you've ever had an abnormal Pap test, that's what's going on there. It's related to HPV infection, and we can prevent those abnormal Pap test experiences, too.

Katie: And I know that's often a window of opportunity that I seize when I'm with patients, if they're there for an abnormal Pap follow-up, to use that moment to talk to them about their children's risk as well.

Deanna: Exactly.

Katie: Often, these are women that might have missed the age cutoff for getting vaccinated themselves. But now, when they're dealing with this in a healthcare setting, then it's like, "Oh, okay. I can see how it might turn out that you're at risk," when you didn't think you were going to be down the road. And that's the tricky thing about this, isn't it?

I certainly see how families approach this differently than other routine vaccinations, and I think you just touched on that a little bit. And I think that the timing of the vaccine comes up for parents. We're getting routine vaccinations when kids are very little, and we don't really have to have a conversation with our kids about the measles, mumps, and rubella vaccine. They're not old enough to have an opinion about that.

But when you're talking about vaccinating a child between 9 and 13, then I think you are having a discussion about why you're getting the shot. And what kid wants a shot, really? So that, I think, can be a tricky thing, is that families are having to have this conversation at a different time.

But do you have data about family attitudes and how that plays into vaccination decisions? And is it different for the general population versus cancer survivors? I know that's something you've studied a little bit, about HPV vaccination among cancer survivors.

Deanna: I think with HPV, the younger you start, the better. So starting at age 9 or 10 with that first dose of the HPV vaccine addresses many concerns that parents have because they're allowed to, through the vaccination schedule, space out the vaccines a little bit.

So, in Utah, kids at 11 and 12 are required to have Tdap/meningococcal. And if they start HPV at 9 and then get their second dose 12 months later, as recommended, they get their second dose at 10. And then when they're 11, they get the two that are required for schools. I think that spacing can be more desirable for parents.

I also think starting HPV vaccine prior to puberty kind of separates the stigma in terms of associating it with sexually transmitted infection and allows us to better frame it as a cancer prevention vaccine.

In terms of attitudes, I've been working in this area in Utah for 12 years, and people are really coming around into supporting this HPV vaccine. When I started here, we had less than half of our kids getting the HPV vaccine, and now we're up to about 60%. We're about at the national average, which I think is great.

Where we see lower rates of vaccination are in rural counties and in Utah County. A lot lower. Not just 10%, but 20% lower than the state average. And this, I think, relates to the stigma around sexually transmitted infection and also additional barriers that may relate to provider-patient communication, maybe feeling a little discomfort talking about HPV with a primary care provider for a young kid, other barriers, like more systematic-level barriers related to access to vaccines. Travel time for one dose versus two and three doses can be a barrier. So I think some of those perceptions have led to some lower vaccination rates.

Katie: Interesting. So are the vaccination rates lower in rural settings across the board, or is that specific to HPV?

Deanna: In Utah, it's largely specific to HPV. Tdap and meningococcal are required for schools, where we are seeing a rise in exemption rates, but still, overall, the vaccination rates for Tdap and meningococcal are quite high in Utah.

Katie: I like what you were saying about doing them together, kind of linking them, that you've got a couple of vaccines you've got to get at 10. I'll get the schedule wrong, but you get your meningococcal vaccine and one of your HPV doses. And then the next year, you go back and you get your Tdap, and you get your other HPV dose.

And so it seems like then it's just like, "These are your 10-year-old vaccines. These are your 11-year-old vaccines." And you don't necessarily have to talk about the sexually transmitted nature of HPV, specifically. This is just going to prevent cancer down the road.

Deanna: And if you start younger, you only need two doses of the vaccine versus three. So that's great.

Katie: Yeah. I mean, I think that if we can get that message out, that's really helpful. And I know that's the thing you're working on, for sure.

Do you see differences in ethnic or socioeconomic groups, or is it just more the rural-urban divide that you're seeing?

Deanna: So we have seen some differences by Hispanic ethnicity, with Hispanics having higher rates of HPV vaccination than whites in the state of Utah, at least for the first dose.

It relates to trust in clinician, recommended vaccines. That trust value is really prominent among the Hispanic community. I mean, this is just broadly speaking. Obviously, individuals are different than when we talk about groups overall.

We also see really effective bundling of the HPV vaccine, community health centers that have large Hispanic patient populations. Yeah, we've just seen some more effective approaches.

Katie: Which is exactly what we're thinking about here now, is the social domain. There's a way in the Hispanic community that healthcare is being delivered that connects socially. Those seem like important things to understand and be able to leverage. How do we figure out what those hooks are for other communities?

You mentioned this about the Hispanic community, the relationship between patients and healthcare providers. Do you think that that's different in the Hispanic community or different in the communities with lower vaccination rates that we should be thinking about?

Deanna: It's hard to make generalizations, but we know that there's a high level of trust among Hispanics in their perception of their doctors, their clinicians, their nurses, trusting that recommendation.

And I think, in other communities, some of the media that is prominent and taken in to a higher degree may present more misinformation. And this could be social media. It could be news on cable. I mean, there's just a lot of misinformation out there, and if you're taking that in through different information sources, you may then be more skeptical of a provider's recommendation for a vaccine.

Katie: I think that is so powerful. I just saw something really recently that a third of Gen Zers get their information from TikTok before they ever talk to their doctor. And when asked who they trust more, they trust a video on TikTok more than they trust their healthcare provider.

Deanna: Social influencers, yeah.

Katie: Yeah. So social media is a powerful tool for health education and, unfortunately, a vector for misinformation as well.

Does your research touch on what we should be doing in the social media space to be better influencers?

Deanna: I'm working on a study where we're looking at news stories about HPV vaccine, and then we're looking at postings related to those news stories on social media. And we definitely see more misinformation being shared across rural communities than urban.

Katie: Interesting.

Deanna: That's one factor that may correlate with higher levels of vaccine hesitancy. So we're working to counteract that misinformation by delivering social media ads that represent a trusted source, so either someone from their community people trust, or an ad that touches on the importance of family values and protecting your child's health, as a way to deliver accurate information using a trusted social influencer.

We're trying to counteract the misinformation with other social ads that focus on facts and science, but represent the values that resonate with many diverse rural populations and urban populations who may be a little bit more hesitant about the HPV vaccine.

Katie: Awesome. That seems like such important work. And I'm always so much aware when I'm looking at social media how anger and fear seem to dominate. That's the currency of the environment. And so yeah, getting to the trusted person and hearing some good news, it just doesn't seem like it gains the same traction.

Deanna: Yeah.

Katie: Well, as we're talking about social media and the messages out there, I do want to just take this opportunity to say that vaccines, all vaccines, including the HPV vaccine, have been thoroughly studied. They're very safe, they're highly effective, and they do not cause autism. So just to make sure that we get that little sound bite in here.

All right. So, Deanna, I know you're working on another kind of new and exciting aspect of cancer prevention, which is the self-collection of an HPV test. This is going to be another complete game-changer, I think, especially for people who face social or cultural barriers to traditional Pap screening. So if you have a minute, I would love for you to tell us about this new research as well.

Deanna: Yeah. We, in the cervical cancer prevention advocacy world, are just over-the-moon thrilled with the recent FDA approval of two HPV self-collection tests. This is a game-changer because when you look at women who are diagnosed with cervical cancer, the majority of them are overdue for cervical cancer screening through Pap or have never had cervical cancer screening.

And when you look at reasons why people are overdue or have never had cervical cancer screening, there are a lot of social factors. It could be embarrassment in having a pelvic exam. It could be a history of sexual trauma, experiencing trauma during a pelvic exam. It could also be partners maybe not comfortable with their wife or spouse having a pelvic exam by someone of the male gender. There are a lot of barriers. It could be access. It could be body image issues.

And so to allow a woman or a person with a cervix to do this in the privacy of their own home or at a bathroom stall in the clinic . . . So right now, it was approved for being delivered in the clinical practice, but we expect the home option to happen over the next year or two.

We're waiting for U.S. Preventive Services Taskforce to adopt this. It's part of the draft guidelines that we're waiting for to be reviewed and accepted. But it's also been recently approved for integration in the breast and cervical cancer screening program, which is a huge game-changer.

Katie: Yeah, so exciting. Do you think that there is pushback from the healthcare system to allow patients to self-collect? Is there attention there?

Deanna: I don't believe so. We are doing a pilot project right now in two community health center systems and one urban community health center, and the healthcare teams are embracing it. It is being counted as cervical cancer screening, the same way that a Pap has an HPV co-test, but it's actually being billed as primary HPV testing.

And so many clinical practices have yet to adopt primary HPV as the cervical cancer screening tool, but this allows the patient to do it themselves. And so it doesn't impact finances on the clinic level in terms of how cervical cancer screening is billed, but it really helps community health centers because it helps improve their number of eligible patients who are up to date with cervical cancer screening.

Katie: I also imagine it's going to help with understanding. We've talked about this a bit before, that understanding cancer prevention and the link between HPV and then this sort of nebulous thing called a Pap smear, and that people think a Pap smear tests for all kinds of gynecologic cancers.

And so this does start to distinguish that we're looking for HPV and that that's what causes cervical cancer, and that your pelvic exam and some of the other examinations you're getting at the gynecologist are what's screening for other conditions, ovarian cancer, endometrial cancer, aging changes, or other skin conditions. So it's nice to be able to kind of specifically give this test a name. I think that will help.

Deanna: And so far, it's been very well received. We've adopted educational materials to give women instructions on how to complete this test in English and Spanish. We have videos that we're disseminating to these community health center practices that are in our pilot study. We are working on provider scripting for how to recommend the HPV self-collect to their patients.

And we're facilitating the process where the HPV tests are analyzed quickly, and the results are delivered back to the healthcare practices within a week. Then they communicate and reach out to the patients, and then they're triaged based on if they have no HPV infection, if they have HPV 16 and 18, or another HPV type. So that affects their next steps, which could be just wait another 3 years if they have no infection, 16 and 18 get a colposcopy, or the other HPV types.

Katie: And do people have to come back in for a second visit for the Pap test, or can they run that off the sample?

Deanna: No, they will have to still come back in. It's triaging. So it's allowing practices to focus on the patients who need the most attention, which overall is more efficient and saves healthcare systems money.

Katie: Right? And if we can save money and see more patients and do more screening, that's going to be really important.

But I still think the vaccination is just such a crucial thing, and I want to kind of keep reminding people that vaccination can start as early as age 9. Ideally, you want to get the vaccine completed by age 13. That really looks like when it's going to be the most effective. But if, for some reason, you didn't get vaccinated, both males and females can get the vaccine all the way up until age 45.

Deanna: Yep.

Katie: And that's with insurance coverage. From time to time, I have a patient who gets divorced after age 45 and is going to be dating again. Sometimes, for some individuals, it's not the worst idea to think about getting the vaccine even if your insurance won't cover it. It may still be something that people consider worth paying for. And I've seen that happen as well.

Deanna: And the vaccine is covered for kids, regardless of insurance status, up through age 18 through the Vaccines for Children program. You could access that at community health centers and health departments, and big systems like University of Utah and Intermountain.

Katie: Good tip. Thank you, Deanna.

Well, Deanna, thank you so much for joining us today and sharing your research and your expertise. Is there anything that you wanted to talk about or anything about your research that you want our listeners to know about?

Deanna: Well, I just want to share that this is probably one of the most exciting times to ever be involved in cervical cancer prevention. We are really hoping to eliminate cervical cancer. And I'm here at Huntsman Cancer Institute. We have the tools to eliminate this cancer in the United States and worldwide. We just have to use those tools.

Katie: That's got to be pretty amazing.

Deanna: It is, yeah.

Katie: And I'm hearing about some other breakthroughs in vaccine-preventable cancers, so this really may turn out to be the wave of the future.

Again, thank you for your research, because I think also what you've been doing of looking at all the things that might be vaccine preventable, that insight into, as we were talking about today, people's social networks. Individually, we're making decisions not just based on medical facts, but the social contexts in which we live.

And so understanding those social factors, your family, your community, are you in an urban setting or a rural setting, where are you getting your health information, all those social influences make a difference, and it might not even be a difference that you're conscious of. And so I think the value of the research that you do that looks at that and examines it and helps us understand how to take action on it is so important.

Deanna: I would like to say, for anyone who's a clinician or works in a healthcare setting, how you communicate about the vaccine is actually the number one predictor of whether or not a parent gets that vaccine for that child. So you really want to use strong recommendation language and focus on this as a cancer prevention vaccine that has been normalized into practice and is given to all kids.

Katie: Yes. And I think we do have a lot of listeners who are healthcare-adjacent, so you heard it here. That's strong vaccine language. "Normal. I recommend it."

Deanna: Exactly.

Katie: Thank you, Deanna. So we hope that you've enjoyed this conversation about the social domain of Pap smears. Please share it with your social network. Sometimes these conversations can be difficult, may be difficult to have over the family dinner table, but they should be an important part of "the talk" that you are giving to your kids around the age of puberty.

If there's anything that we can do to provide resources to help you with that information, that's what we're here for at the University of Utah and Scope Radio.

You can find the rest of our podcast series on the Pap smear wherever you get your podcasts, or at the "7 Domains of Women's Health," which is online at womens7.com. And then, as I said, our podcasts are on all your usual podcast outlets. So go back and listen to the rest of the series. This has been a fun one to do.

Deanna, once again, I'm really grateful for your time, your expertise, and all of your work in this field. Thank you.