Q&A: Navigating management of women with high-risk HPV but normal cytology
Key takeaways:
- Many women who test positive for HPV with negative cytology do not receive follow-up testing.
- Clinicians must eliminate barriers to retesting and clearly communicate the risk for developing cervical cancer.
Fewer than half of women who tested positive for HPV with negative cytological findings returned for a surveillance co-test within 1 year as recommended, yet more than half of those who received testing had HPV persistence or progression.
More U.S. health care systems have shifted to HPV-based cervical cancer screening, meaning patients are more likely to receive results for positive, high-risk HPV results — though not the highest risk 16/18 genotype — along with negative cytological findings, according to Jasmin A. Tiro, PhD, director of the Center to Eliminate Cancer Inequity and associate director of cancer prevention and population sciences at the University of Chicago Comprehensive Cancer Center. Current risk-based management guidelines recommend two consecutive negative annual results for a patient to return to routine screening; however, women with mixed findings often do not receive the recommended follow-up testing for a variety of reasons, Tiro said.
“If we do not keep monitoring these patients, we cannot practice prevention by removing precancerous cells, preventing cancer from occurring,” Tiro told Healio. “That is why it is so important to stay in close contact.”
Healio spoke with Tiro about how follow-up of women with mixed findings can vary by where they live, potential interventions that can help increase retesting, and the importance of clear communication that informs women of their risks. Tiro and colleagues’ study was recently published in JAMA Network Open.
Healio: What led you and your colleagues to conduct this analysis?
Tiro: The management of abnormal cervical cancer screening results is complex. We have two screening tests used in the U.S. One is the Pap test, which takes a sample of your cervical cells to see if the cervical cells are abnormal. The other test is the HPV test, which sees if the patient is positive or negative for an HPV infection. Depending upon which test you receive first, or the combination of tests, different results warrant different types of follow-up.
Most studies have focused on higher-grade abnormalities, where the recommendation is to get an immediate colposcopy to look more closely at the cervix. But the lower-grade abnormalities — normal Pap results and then a positive (not for 16/18, the more high-risk versions), but other HPV types, is an increasingly more common result because we are doing more co-testing. Many women are given this result and instead of being asked by your clinician to do something immediately, you are instead told that we want to see whether your HPV infection persists or progresses or if your immune system resolves it. So, the recommendation is a surveillance co-test at 1 year. There has not been much research on how many people follow-up with this surveillance co-test at 1 year. These patients are not in the clear, and it is important that they stay engaged with the health care system and monitor for this persistence. Ours is the largest study to date in the U.S. We looked at patients from three health care systems from three different states: Dallas, Texas; Massachusetts and Washington state. Very different populations with different health care contexts.
Healio: Can you describe the study design and the findings?
Tiro: We used a cohort design. We took patients enrolled in those three systems and used their electronic medical records to follow them over time. We identified those patients when they had a normal Pap and a positive HPV result. We looked at them after that time to see what kind of interactions and contact they had with the health care system and if they received a surveillance co-test within 16 months after that result. This was between 2010 and 2018. This finding of a normal Pap with positive HPV test is not that common of a finding — we had more than 1 million women across the three health systems, and we ended up with about 13,000 women who had this result.
We found that less than half of these women were retested. Of those retested, 58% showed HPV persistence or progression to abnormal cervical cells. We know, based on their interactions with the health care system, that 7% exited or moved to a different system, so very few women had documentation.
One of the surprising findings is that one may think that most women will clear an HPV infection on their own; their body takes care of it. The fact that we observed that 58% of women showed persistence or progression, shows they are still at risk for cervical cancer.
Healio: The findings revealed some substantial variation across the three health systems. What might be behind some of those differences?
Tiro: These were very different patient populations. When I used the words “safety net system,” that means that most were uninsured patients. In Texas, many patients were uninsured, as Texas did not participate in the Medicaid expansion program. Many patients had lower incomes or lived in an area with socioeconomic barriers. That makes it more difficult to stay in contact, even with a great health system with good outreach like UT Southwestern Medical Center. In the Kaiser Permanente system, there is a lot of what we call insurance churn, meaning contact can be more difficult. The Mass General Brigham population is older. Also, many health systems cannot book follow-up appointments more than 3 or 4 months out. It is then dependent upon the patient to know that this is important and then to call and schedule that appointment. That is a hurdle. Depending upon what the system has, we found that none of them had a good way to track these women in their health system. Many had informal systems with a running Excel file list. There was no way for the electronic record to prompt someone to contact these patients and schedule their follow-up appointment.
Healio: What are some other interventions that might improve health care delivery for these patients?
Tiro: We have learned how social determinants of health impact a person’s ability to carry out recommended health behaviors. We recognize that we need active outreach, including patient navigators and community health workers. These are ways to help. It is also important to communicate clearly and help patients understand that while this particular result is not urgent — you do not have to do something today — it is important for you to follow-up. This involves using the correct language so a person doesn’t leave the appointment thinking that they have cancer. But, if not monitored closely, they could develop cervical cancer. Communication by the clinicians and the clinical staff who support the clinician is key. Community health workers in particular, because of their familiarity with lay language, can help communicate that message in a way that simply resonates better with patients.
Healio: What is the take-home message for clinicians?
Tiro: There are consequences of not following up. We observed 10 cervical cancers developing from patients who had this HPV infection. That might be an undercount. Some of the women may have moved out of state. We might be under-detecting what is happening, and the other issue is we might be undercounting how many women were retested, because there is so much fragmentation in our health care systems. Very few places in our country actually help health care systems communicate with each other. Regional health information exchanges are not very robust. This puts more burden on patients to manage that, and some, because of their life circumstances, have a difficult time doing that.
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For more information:
Jasmin A. Tiro, PhD, can be reached at jtiro@bsd.uchicago.edu.