Making sense of HPV and Pap test results: What do women need and want to know? Findings from CDC qualitative research with women, ages 30-65 years

Background:
An HPV diagnosis in the context of cervical cancer screening can elicit patient anxiety, distress, guilt, shame, anger, partner concerns, and confusion, reducing likelihood of follow-up. Accurate HPV information has been shown to alleviate patient concerns/confusion, but there are currently no such materials for women with limited literacy skills.

Objective:
To test low-literacy English and Spanish materials designed to help women understand HPV and their HPV/Pap test results; reduce associated distress and partner concerns; and promote appropriate follow-up.

Method:
Low-literacy English and Spanish materials were tested with 30-to-65 year-old African-American, White, and Hispanic women. A total of ten focus groups (N=90), segmented by age (30-45yrs; 46-65yrs) and language (English/Spanish), were conducted in three U.S. cities to assess participants' awareness and knowledge of cervical cancer and HPV, and reactions to material content and designs. Each group was audio-taped and transcribed, with >2 observers/note-takers. Results were analyzed using a notes-based strategy with three independent reviewers.

Result:
Overall, participants were aware of, but not knowledgeable about HPV and cervical cancer. They felt the information was important, useful, and easy to understand, but were confused about the natural history, severity, transmission, types, treatment, and testing guidelines for HPV. Many felt the materials would reduce anxiety if they received abnormal HPV/Pap test results, and motivate them to follow up. Participants had many partner-related questions and appreciated information addressing these concerns.

Conclusion:
HPV, cervical cancer screening, and HPV/Pap test results are complex and challenging topics to communicate to low-literacy audiences, even in the absence of an abnormal diagnosis.

Implications:
Several HPV concepts are counterintuitive to women and must be carefully explained to ensure that patients understand their test results; do not experience unnecessary fear, anxiety, or stigma; and return for needed follow-up. Recommendations are made for meeting these patient needs.