Challenges in HPV Education and Counseling

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 ConcernsASHA: 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 > 8th grade

10. 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 Methods(Brandt et al, 2003, U of S Carolina) Content Assessment Messages

11. Results(Brandt et al, 2003, U of S Carolina) SAM Score

12. The Challenge of Straight Talk “You Are Now Entering ‘THE GREY ZONE’”

13. Bethesda, etc.

14. A New Matrix: The ‘DNA Pap’ 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. 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 Acknowledgements