Women's desired information about human papillomavirus

BACKGROUND. As human papillomavirus (HPV) DNA testing is incorporated into cervical carcinoma screening programs, educational messages must be developed to inform women's screening choices and manage psychosocial responses to HPV DNA test results. However, little is known about women's questions and concerns about HPV or their attitudes toward HPV testing. METHODS. Eight focus groups with 48 ethnically diverse, low-income women were conducted at community centers, family planning and primary care clinics, and substance abuse rehabilitation facilities in Massachusetts. RESULTS. The participants' comments and questions about HPV revealed five major themes. First, most women overestimated the likelihood that women with HPV would develop cancer. Second, women struggled to balance the anxiety of knowing that HPV infection causes cervical carcinoma with the information that HPV infection often regresses without treatment. Third, many women were confused that Papanicolaou smear results could be normal when HPV infection is present. Fourth, women preferred to receive a personalized risk profile to assess their own likelihood of contracting HPV infection and cervical carcinoma. Fifth, younger women focused on the sexual transmission of HPV infection, rather than on its potential to cause cancer. CONCLUSIONS. Effective HPV education must include information about transmission, prevention, treatment, and cervical carcinoma risk; tailor messages to describe HPV susceptibility according to age and risk profile; present clarification regarding HPV strains and their consequences; offer explanations of different types of tests and their results; and provide a balance between accurate discussion of cancer risk and reassurance that following recommended screening practices will reduce risk to negligible levels. (C) 2003 American Cancer Society.