1. Challenges in HPV Education and Counseling Charles Ebel American Social Health Association (ASHA)

2. 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

3. Education in the Context of ‘Patient’ asha

4. 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

5. Initial Caller Concerns ASHA: National HPV& CCP Hotline, 2003 asha

6. Topics Discussed - Part I asha

7. Topics Discussed - Part II asha

9. 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 > 8 th grade

10. 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

11. Results (Brandt et al, 2003, U of S Carolina) Not SuitableAdequateSuperior Number of Materials 1560 Average Readability 12 th 8 th N/A Ave. Readability Range 6 th – 17 th 5 th – 10 th N/A Ave. HPV Content Score 69%46%N/A SAM Score

12. 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?

13. Bethesda, etc. DESCRIPTION DEGREES OF SEVERITYEXPLANATION Descriptive System Mild dysplasia, Moderate dysplasia, Severe dysplasia CIN SystemCIN 1, CIN 2, CIN 3CIN 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 SystemClass 1, Class 2, Class 3, Class 4 This system is no longer widely used

14. A New Matrix: The ‘DNA Pap’ Pap -Pap + HPV + * HPV - * asha

15. 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

16. Education by Health Care Providers The usual challenges: – Time – Training – Psychosocial complexity of viral STD Additional Resources needed: – Print, hotline, etc. asha

17. 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

18. 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

19. Education in the Context of Awareness asha

20. 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

21. 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

22. 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

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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