# Presentation: 205712

## Challenges in HPV Education and Counseling

- Charles Ebel
- American Social Health Association (ASHA)

**Notes:**
Thanks very much for the opportunity to speak here today.

This talk will be a review from a somewhat historical perspective...trying to look at where we are heading in HPV education and some of the hot button issues to be confronted in the months and years ahead. I  will speak to these subjects with reference to some recent research  on education, awareness and the behavioral impact of  genital HPV infection...

and make you aware of the investigators who are working in this field.

## Overview

- New technologies drive better understanding of genital HPV
- New clinical and programmatic approaches
- New conceptual vocabulary
- Educational messages in the ‘patient’ setting:
- Needs of patients
- Grey zone topics
- New content re: HPV DNA tests
- Education in context of public awareness
- STI vs. ‘cancer virus’
- Potential for stigmatization

*asha*

**Notes:**
We’ve heard two talks that show us where the science if headed. And obviously the new technologies developed – both testing and HPV vaccine development – will ultimately dictate new clinical approaches. In the case of HPV DNA testing we are already in the midst of an important transition as we’ve heard from Dr. Wright.

From an educational standpoint, though, it’s important to recognize that this evolution also changes the conceptual vocabulary. And we’ll look briefly at some of the challenges there ....     I’m going to break all of this into two major sectiions, 

looking first at Educational Messages in the Patient setting .... And I use the term patient just for convenience b/c arguably not everyone with HPV is a patient. This will  include a review of the NEEDS of patients, some of the grey ZONE topics that distinguish HPV, and the need for new educational content re: test results.

Secondly, we will focus on Education in the Context of Public Awareness ... which holds a number of challenges ...specifically how do we characterize HPV to the public and what kind of response from the public do we wish to engender. For example, people in the field have already struggled with the question of whether to characterize HPV as an STI or a “cancer virus” .... And in this dialectic between the viewpoiints on this question is the issue of social stigma.

## Education in the Context of ‘Patient’ 

*asha*

## Two Separate Clinical Entities?

- Education and counseling driven by two most frequent clinical outcomes
- External genital warts (EGW)
- Abnormal Pap tests
- Are there distinct messages for these two situations?
- Separate titles but overlap in messages

*asha*

**Notes:**
The talks this morning have probably focused more on hi-risk types of HPV, but education and counseling are driven by two most frequent outcomes, external genital warts and cervical infection as detected by abnormal Pap tests or other kinds of HPV tests. Clearly there are other important clinical issues, but EDUCATIONALLY this what we can say has been studied to some extent.

And you can make a case that in order to keep messages about HPV simple you should have distinct messages.  EG brochures that specifically address EGW and other brochures that specifically address cervical infection and high risk types. In reality this is difficult to achieve, as there is OVERLAP in messages – EG, you find some discussion of cervical cancer risk in a brochure on EGW and vice versa. ASHA’s experience: callers confused re: hi versus low-risk.

I think you’ll see from the some of the analyses that have been done, the tendency of educators in the public health and even clinical care  is to be comprehensive in their approach  – to address as many aspects of HPV as they can squeeze in ... to the available time or publication format

In looking at PUBLIC AWARENESS, we will see  a very different principle holds in the  the news media ...

## Initial Caller ConcernsASHA: National HPV& CCP Hotline, 2003

*asha*

**Notes:**
Let’s look at patient concerns first. Lots of approaches to this, a number of studies have been done to  ascertain what people  want to know about HPV and what needs to be addressed

As one indicator  I think it’s useful to look at the experience of the National HPV Resource Center, which has operated a telephone hotline among other services since 2000. This serves primarily people diagnosed with HPV but also those who are calling b/c of concerns about exposure ot general concerns about risk. And here is the category of INITIAL CALLER CONCERN, 

And this is how the leading variables compare .... with about 20% calling with an initial question on Pap smears, 20%% calling about transmission, 20%  EGW or other symptoms, and just under 10% with questions about testing other than Pap smears.  OTHER = TREATMENT or “STAT’s”

730 = N 

Answered:

2002: 6,482

2003: 4,227

## Topics Discussed - Part I

*asha*

**Notes:**
But when you track the entire conversation and record the various topics that come up you get a different picture .... 

A picture of a very involved conversation.  Here the leading area topic is TRANSMISSION at 73%, followed by ....

But that’s not all ....

## Topics Discussed - Part II

*asha*

**Notes:**
You’ve also got ...

Treatment ... 

Emotional concerns such as whether to disclose to partners and WHAT to disclose 

And PREVENTION, which includes a variety of questions about risk reduction, including condom use, risks of oral sex and utlility of dental dams, etc. 

## Slide 8

## Evaluation of Existing Print HPV Educational Materials(Brandt et al, 2003, U of S Carolina)

- 21 existing materials evaluated
- readability, suitability, content
- Most materials “not suitable” or “barely adequate”
- Inconsistent information
- Lack of cultural appropriateness
- Medicalized vocabulary
- Reading level > 8th grade

**Notes:**
So if that’s what it’s like in an interactive setting – IE TELEPHONE – how does it go IN PRINT.
Well this is a slide summarizing a study by Heather Brandt and colleagues  at Univ of South Carolina.
They took ... diverse group of  materials representing ...  commercial publishers, professional associations such as ACOG, nonprofits such as ASHA and they evaluated them for .....

Readability assessments (SMOG, Fry) 
Suitability assessment (literacy, visuals, cultural)
Content scores, according to key content messages

And the bottom line was not real pretty  ....

## Methods(Brandt et al, 2003, U of S Carolina)

- HPV is sexually transmitted
- HPV is a virus
- HPV is common
- Two types: high-risk and low-risk
- HPV may cause cervical cancer
- HPV causes genital warts

- HPV may cause abnormal Pap test
- HPV may affect pregnancy
- HPV treatment
- HPV is spread via skin-to-skin contact
- Condoms do not always prevent
- Important to have regular Pap tests

**Content Assessment Messages**

**Notes:**
And I think it’s interesting to see how these materials fared in the content area ....and compare that to the literacy aspect ....

Here are the 12 key messages that Dr. Brandt’s group chose for the CONTENT ASSESSMENT piece ....

## Results(Brandt et al, 2003, U of S Carolina)

|  | 
Not Suitable | 
Adequate | 
Superior |
| --- | --- | --- | --- |
| Number of Materials | 
15 | 
6 | 
0 |
|  |  |  |  |
| Average Readability | 
12th | 
8th | 
N/A |
| Ave. Readability Range | 
6th – 17th  | 
5th – 10th  | 
N/A |
| Ave. 
HPV Content Score | 
69%
 | 
46% | 
N/A
 |

**SAM Score**

**Notes:**
SO .....Two key points:

 Scores were abysmal – 0 of 21 materials reviewed were judged to be superior

 The biggest problem seems to be readability . If you’ll notice the NOT SUITABLE column (column 1)  reading level is scored as TOO HIGH with AN AVERAGE OF  12th grade ... BUT AVERAGE CONTENT SCORES IN THAT COLUM IS  actually 70% -- much better than the content scores of the  materials judged to adequate in that they were closer to the target readability range.

THUS ... Increasing scores on HPV content assessment were at the expense of readability in some judged to be suitable. 

## The Challenge of Straight Talk

- “You Are Now Entering **‘****THE GREY ZONE****’**”

| Signs/ Symptoms	 |  May or may not cause signs/symptoms
 EGW vs. cervical abnormalities
 Other clinical manifestations: anal, etc. |
| --- | --- |
| Infectiousness |  Transient vs. persistent: how can you know?
 |
| Prevention |  Condoms incomplete: what % protection? |

**Notes:**
And why is this ...? 
Why is it so hard to hit the right notes and do it an a 6th grade reading level?
Well, SAYING IT SIMPLY when it comes to HPV is very tough.

With HPV,  virtually  every topic involves shades of gray ... (I’d like to play the Twilight Zone theme here but you get the idea)

Let’s just look at three of the usual topics around which a patient education is organized ... Well of course, as with some other STDs you have to explain that HPV may or may not cause syx and you have to explain that these syx cover a wide gamut from EGW, something you can see and sometimes feel, to cervical lesions that you definitely cannot see and usually cannot sense.

Then if you want to be thorough, you can get into other manifestations of HPV infection, including anal infections, the potential for genital carcinomas.   PATIENT OVERLOAD!
As regards INFECTIOUSNESS, you have the whole problem of transient versus persistent.  Are we telling people that this is FOREVER???.  Well, the research leaders have mostly told us NOT to explain this as a knock off of herpes, where you say that this is lifelong and there is always the chance of recurrences or viral shedding.  
And yet we perhaps lack clear boundaries for telling those diagnosed when they are most at risk and when they are NOT AT RISK.
And then we get to PREVENTION .... And again we lack a clear prescription. At ASHA our SCientific Advisory Committee has reviewed language we use to talk about condom use as a form of risk reduction 
And we do that but we give some  caveats that it’s not 100% protection ...and we don’t have the arithmetic to handicap  that precisely. WHICH is what a client often wants.
And of course with the high prevalence of HPV making advice based on mutually monogamy as was once done with HIV and other STDs is often not helpful advice. 

## Bethesda, etc.

| DESCRIPTION  |  DEGREES OF SEVERITY  | EXPLANATION  |
| --- | --- | --- |
| Descriptive System  | Mild dysplasia, Moderate dysplasia, Severe dysplasia  |  |
| CIN System  | CIN 1, CIN 2, CIN 3  | CIN stands for cervical intraepithelial neoplasia  |
| Bethesda System (2001)  | ASC-US (Atypical Squamous Cells of Undetermined Significance) ASC-H (Atypical Squamous Cells-can not exclude HSIL)  Low-Grade SIL (LSIL) High-Grade SIL (HSIL)  | Means the results look borderline between “normal” and “abnormal”  Borderline results, but may really include High-Grade lesions  SIL stands for squamous intraepithelial lesion  |
| Class System  | Class 1, Class 2, Class 3,  Class 4  | This system is no longer widely used  |

**Notes:**
No need to read this slide .... This is just a snapshot to illustrate the challenge of creating the readable / accessible content on HPV .... 

So, FOR ONE THING,  if you have terms like ASC-US and LSIL .. Even if you want to radically redefine the terms you are starting off with material that’s potentially very off-putting...or at the very least pushes reading level a bit higher.

That’s not to say it’s insurmountable, but the challenge to us is creatively devise a new lexicon that works at 6th or 8th grade level without mis-stating the science.

I’ll come to some recommendations on this in Part 2 of my talk.

## A New Matrix: The ‘DNA Pap’ 

|  | Pap - | Pap + |
| --- | --- | --- |
| HPV + | * |  |
| HPV - |  | * |

*asha*

**Notes:**
And of course, as we’ve heard earlier today, an important part of this new lexicon will be messages to interpret the why’s and how’s and results of  the HPV DNA tests.

An especially daunting issue is that of discordant results between Pap and HPV tests ... What exactly do you tell the person who is Pap negative but HPV + ???

Dr. Wright has outlined  the current recommendation on this from the Tucson group. These now need to make their way into print materials and Web sites and counseling kits for providers.

## Condoms and HPV

- Current studies not adequate to fully address the role of condoms in prevention of HPV transmission
- Literature review/analyses by Manhart/Koutsky, Dunne et al
- Problem of incident infections
- Condoms: NOT a ‘Spin-Free Zone’
- Condom use associated with lower rates of EGW in men, cervical cancer but not reduced risk of HPV per se (NIH Workshop)

*asha*

**Notes:**
For HPV specifically, the NIH report concluded that most of the reviewed studies did not obtain sufficient information on condom use to allow careful evaluation of the association between condom use and HPV infection or disease. The report also concluded that there was no epidemiologic evidence that condom use reduced the risk of HPV infection, but that condom use might afford some protection in reducing the risk of HPV-associated diseases, including warts in men and cervical neoplasia (cervical cancer precursors and invasive cancer) in women. More recently, an even more detailed review (Manhart/Koutsky) of the published literature on condoms and HPV infection and its sequelae came to similar conclusions as the NIH report and elaborated on the many methodologic issues affecting studies of condoms for HPV prevention

## Education by Health Care Providers

- The usual challenges:
- Time
- Training
- Psychosocial complexity of  viral STD
- Additional Resources needed:
- Print, hotline, etc.

*asha*

**Notes:**
Of course, moving beyond print materials and publishing, education by HCP’s is a critical piece. And some of the studies funded by CDC have focused on this aspect. And to give an overview here, the issues are  surprisingly very familiar themes in the world of sexual health and patient counseling –

 IE, clinicians have limited TIME for counseling on a complex topic such as this, there are ISSUES of TRAINING, both in knowing what to say about an HPV diagnosis as well as how to say it. And providers interviewed in focus groups have pointed to the importance of having tools and referrals ...

As regards the complexity of this, there really appears to be an issue of making the information stick for patients ....

Study by Patricia Sharpe PhD at USC, presented 2003, analyzed interviews with 50 women over a wide age range who had been with HR HPV and informed of it by clinicians... In the interviews of these women the majority did not know they had tested + ...so at least in some populations that’s potentially going to be an issue. 

## Health Care Providers’ Interactions with Women Who Have HPV (Brandt et al, 2003, U of S Carolina)

- Providers’ perceive patient response:
-  angry, mad, scared, blaming
- Patients question _source of infection_ and treatment options, effects on health, required follow-up and _impact on future sexual activity_
- Need for appropriate educational materials;   referral to free sources of support

**Notes:**
Focus groups with health care providers from four clinics in a rural region of SC (N=35) 
What are current HPV counseling practices and perceptions of what HPV+ women need and want to know
HPV+ for HR TYPES

## Psychosocial Aspects 

- HPV’s triple threat (Daley, 2003)
- Sexually transmitted
- No certainty re: cure
- Cervical cancer connection
- Disclosure to partners
- Studies on genital herpes show that roughly 30-40% do not disclose to current sexual partners

*asha*

**Notes:**
So  arguably there is a psychosocial impact to an HPV diagnosis that may make counseling more difficult or time-consuming.  And I say MAY BE b/c we don’t want to CREATE a psychosocial burden for people diagnosed with HPV if we can help it, and we don’t want to exaggerate the psychosocial issues.  BUT there is some data which points to a psychosocial burden in some women. 

Dr. Ellen Daley At UNIVERSITY of South Florida  .........has has looked at Women’s Reactions to HPV DX and what they HEAR .... She points out that there are three very tough messages for women to take in ... AND IN HER RESEARCH what women HEAR when diagnosed predominantly is the fear-inducing MESSAGE OF CERVICAL CANCER.

Disclosure is a major issue for persons DXd with genital HSV, and this seems to be significant in the  HPV world. 

Study by Holly Rayko found 70%  disclosed.

## Education in the Context of Awareness

*asha*

**Notes:**
HPV, apart from its clinical outcomes up until now has generally not been a focus for awareness or education
Low recognition of HPV in studies .... Lots of barriers to awareness campaigns

## General Awareness of HPV

- Kaiser Family Foundation survey results, 2000:
- 70% unable to name cause of CC
- 76% had never heard of HPV
- KFF youth / young adult survey 2003
- 60% of teens / young adults do not know ‘STDs can cause some kinds of cancer’
- U of South Florida, 2003:
- 22% of women ‘had any knowledge about HPV’
- Majority of at-risk adolescent women lacked HPV knowledge; no recall from sex ed

*asha*

**Notes:**
 A number of surveys have looked at general knowledge and awareness of HPV among US residents. One survey oft-cited is the Kaiser Family Foundation study 
KFF/Harvard School of Public Health, Health News Index, Feb. 2000.  
70% of Americans had not heard of HPV, out of 1,006 Americans polled at random during Feb 4 - 7, 2000.  

Studies by Baer, Dell, Ramirez give similar result in the same time frame.

A subsequent Kaiser study among teens published in 2003 suggested that  ....

A number of more recent qualitative studies have drilled down into this question in various populations  
Data collected by Jennifer Packing – Ebuen EH’  BWEN ... from women 18-35 at two large Planned Parenthood clinics (N=830) and student clinic at USF (N=474) as part of intake for a smaller quantitative study ....

Also of interest a study by NAY OOM

Patricia Sharpe at USC also had a study showing poor knowledge among women with Pap result of ASCUS or higher. ....

## News Media Coverage

- Content analysis by Arhang et al of 111 stories re: HPV  (*Cancer*, 2003)
- Leading themes
- 36% New tests for CC
- 30% on the HPV-CC link
- 27% HPV as an STI, cause of EGW

*asha*

**Notes:**
And if we look at where people would become aware of HPV, certainly the news media is one key indicator of what’s going on ...

## Media, cont’d

- Stories not comprehensive, e.g.
- Most HPV+ women do not get CC: (26% )
- HPV can be asymptomatic: (14%)
- STI – Cancer disconnect:
- Stories on new screening tests omit transmission risks, prevention
- Stories with STI angle leave out screening

*asha*

## What Women Want to Know?

- Focus groups w/ 48 women (Arhang et al, 2003):
- Overestimation of cancer risk
- Persistence of HPV?
- Confusion about Pap test vs. HPV
- Desire for personalized risk profile
- Younger participants focus on STI (embarrassment/disclosure)

*asha*

**Notes:**
To close this loop, here Anhang and co-authors also looked at the consumers of this information ...
A series of focus groups with 48 women  38%-18 to 29 ; 40% 30-54, 23% over 55. ...

Nearly half were Hispanic, and two-thirds of all had household incomes less than $15,000

Whether they had any previous knowledge or not (most didn’t) MOST women tended to overestimate the likelihood that women with HPV will get cancer and were  surprised to learn that it usually doesn’t progress
 Women were puzzled about the persistence question – does it go away or not?
 Expressed views like< “Well if the Pap smear same out fine and then I need this other test, why do I need a Pap smear”
 HPV – CC message: Women can become focused on the worst-case scenario .... Generic message not helpful
Younger participants focus on STD

## What’s Next?

- Are broader educational campaigns appropriate?
- Will greater awareness lead to stigmatization?
- What is the call to action?
- Condom use
- Abstinence
- Vaccinate

*asha*

**Notes:**

What’s the upside?

If campaign mounted, what aspects of HPV will capture the public imagination?

## Social Stigma and STD

- STDs meet classic sociological definitions of stigmatized conditions
- Existing data show stigma to be a barrier to testing, discussion of risk activities
- Will mass education create stigma or disincentives to screening or vaccination?

*asha*

**Notes:**
Existing data (Fortenberry, Cunningham)

Are there stakeholders to underwrite them?

## History’s Lessons

- HSV: psychosocial impact a key part of morbidity for many
- Herpes remains a prime target for jokes that devalue
- Stigma a barrier to public health measures

*asha*

**Notes:**
There are a number  of problems we’ve encountered with GH that we really don’t want to recreate with HPV:

Psychosocial impact is a major part of the disease burden

## What’s the Spin? Scenario A

- HPV – the common cold of STI (everybody encounters it)
- Generally benign but testing helps to identify when it might be problem
- Some HPV types increase risk of cervical cancer
- HPV testing now done to augment Pap screening
- Risk of acquisition increases with number of partners
- Regular condom use associated with decreased risk of cervical dysplasia from HR HPV types

*asha*

## What’s the Spin? Scenario B

- HPV is an epidemic affecting growing number of sexually active men and women
- HPV is incurable, lifelong
- HPV leads to cervical cancer
- Condoms cannot prevent acquisition

*asha*

## Conclusions

- Effective patient education requires new lexicon
- Educational messages for HPV+ must present CC risks  without creating fear/panic
- Data and scientific consensus needed for defining the role of condoms and other approaches to prevention
- Broad awareness campaigns must be carefully constructed so as not to create a widely stigmatized condition

*asha*

**Notes:**
Needed a new lexicon – a new conceptual vocabulary to communicated some difficult concepts. I recommend a summit of leading publishers and scientific experts to reach consensus on messages and terminology 

some of the toughest areas

... The role of HPV as a sexually transmitted infection requires careful explanation

## Acknowledgements

- _ASHA_
- Joanne Grosshans
- Fred Wyand
- Lisa Gilbert
- _University of South Carolina_
- Heather Brandt
- Patricia Sharpe

- _University of South Florida_
- Ellen Daley
- Jennifer Packing-Ebuen
- Sandra Naoom