By Monica Lefton, Communications Manager
Human papillomavirus (HPV) is the most common sexually transmitted infection (STI), with an estimated 13 million new cases of HPV occurring each year. Many people infected with HPV do not develop any symptoms but could still infect others through sexual contact. HPV is associated with several types of cancers, including cervical, anal, vulvar, penile, vaginal, and oropharyngeal.
Use of the HPV vaccine paired with proper screenings makes many of the HPV-related cancers completely preventable, but education is still far behind what is necessary to reach this reality.
To discuss areas of opportunity surrounding the HPV vaccine education, the Society for Women’s Health Research (SWHR) convened an interdisciplinary working group of public health researchers and professionals, community leaders, and health care providers for a roundtable discussion on November 21, 2022. In a pre-roundtable survey, Working Group members shared the top barriers they encounter with respect to HPV vaccination. They include inconsistent provider recommendations; parent/caregiver hesitancy and safety concerns; misunderstanding/lack of information about vaccine benefits; and perceptions about the vaccine (e.g., unnecessary, associations with sexual activity). During the November meeting, the group discussed how to address these barriers and improve HPV vaccine confidence, access, and uptake through the development of educational materials designed to reach women as immunization decision-makers.
Providers’ Roles in HPV Vaccine Uptake
When it comes to HPV vaccinations, responsibility often falls on the health care provider’s shoulders. However, providers can be unprepared for the myriad of conversations that may be necessary to ensure vaccine uptake, such as why health recommendations may be inconsistent between providers, networks, and clinics; how to address HPV myths that overtake fact; and what to say when HPV conversations are reduced to concerns around sexual activity. Improving provider education and resources is integral to increasing HPV vaccine uptake, the Working Group concluded.
Fred L. Wyand, Director of Communications at the American Sexual Health Association shared suggestions to improve the communication between patients and providers:
“When speaking to clinicians and providers, should we expand beyond the list of ‘what to say’ and also include information on how to say it? Making recommendations on body language, eye contact, tone and tenor.”
Working group members agreed these tips could improve rapport between patients and providers as well as comfort and communication during visits.
Providers should also be educated in the practice of shared decision-making. Shared decision making—the process where clinicians work with patients to help them reach informed, evidence-based, and personally valuable medical decisions (a process especially relevant in screening and vaccination decisions)—could help produce more meaningful and productive HPV conversations, allowing patients to ask their questions while still receiving information about the benefits of the vaccine for their families or themselves. Additionally, the group discussed the value of finding ways to mirror the HPV vaccine conversation to that of Tdap for its prevention of pertussis (whooping cough), which is much more readily discussed by providers and accepted by parents.
Much of the existing HPV educational materials focus on primary care providers (PCPs), leaving an opportunity to improve education for other health care team members. “The nurse is also in an educational role, and the front staff can also be informed about the topic,” said Gabrielle Darville-Sanders, PhD, MPH, CHES, Strategic Director of the National HPV Vaccination Roundtable at the American Cancer Society, who stressed the importance of approaching HPV vaccine uptake from a whole health system lens and “looking at all players and pieces of the health care experience.” She noted that if a given provider cannot sway a patient about the vaccine, other team members potentially could:
“Those at the front desk should be able to answer questions, provide more education about the topic, and even encourage you to come back for vaccination.”
HPV conversations, education, and awareness also need to go beyond the PCP’s office to engage entire communities. Non-conventional providers have an important role to play in community engagement and outreach. Shillpa Naavaal, BDS, MS, MPH, Associate Professor at the Virginia Commonwealth University School of Dentistry pointed to the lack of educational materials around HPV and its risk of causing cancer of the back of the throat (oropharyngeal cancer). As a result, she said, “Not many people or patients know about the connection between HPV and oropharyngeal cancer, and not many providers talk about it either.”
Participants highlighted the benefits of focusing on “non-traditional” care providers, like dentists or pharmacists, and “non-traditional” settings like minute clinics. Some Working Group members stressed that it is invaluable to look beyond the walls of the clinic and consider the role of community health workers, social workers, and community-based organizations in supporting HPV vaccination conversations that are culturally informed and tailored to the community.
Finding an HPV Vaccine Advocate
Spotlighting the personal stories of HPV vaccination has also helped many organizations advance and further engage in the HPV conversation. Wyand and his team at the American Sexual Health Association find tremendous value in telling patient stories as a way to build trust about the vaccine, especially by sharing the stories of parents and grandparents who have chosen to get their families vaccinated. Such stories can also be helpful to reach different groups, such as rural populations, religious or conservative communities, under and uninsured families, LGBTQ+ individuals, non-white racial groups, and other communities facing disparities in HPV vaccine rates and virus prevalence, Working Group members noted.
Another crucial piece of the HPV vaccine puzzle is how to approach conversations in the school setting, where school nurses can be particularly powerful. “There’s a lot of opportunity for school-based vaccination education,” echoed Daniel Salmon, PhD, Professor of Global Disease Epidemiology and Control at the Johns Hopkins University and Director of the Institute for Vaccine Safety.
Amy E. Dark, BSN, BA, RN, the Rhode Island Director at the National Association of School Nurses, has seen first-hand the power a school-based program can have – and particularly the consequences when these health care conversations do not happen in schools. She recommends that school nurses be equipped with resources that allow them to normalize HPV vaccination conversations as a health care necessity, equating it to other vaccinations children get for school and approaching conversations with parents on the vaccine’s benefits from a preventive lens. More importantly, she noted, the earlier the conversation is started, such as in elementary school, the more time school nurses have to build trusted relationships – and the more promising the results may be. “We need to recognize that school nurses can build long-lasting relationships with families and have years-longer opportunities to educate these families than some of their clinicians do,” Dark said. This is particularly true for families who have multiple children who move through a school across several years.
Starting HPV Health Care Early
As communities look to places like schools to start vaccination conversations, Working Group members frequently referenced newer calls to start the HPV vaccine process earlier—at age nine, as opposed to 11 or 12, which is when the vaccine was typically recommended for many years. Participants agreed that encouraging all providers to start this conversation about vaccination as early as age nine can help with avoid the sexual stigma of the HPV vaccine, as well as ensure children are protected before any sexual activity starts. Additionally, starting conversations early can help tie HPV to the other school-age vaccines adolescences may receive. There is untapped value in framing HPV as one of several recommended vaccines for preteens, and just one part of the overall health conversation.
At what age should health advocates start speaking directly to teens about getting the HPV vaccine, if they have not yet received one? That area is grey, the roundtable agreed, and “there’s a ton of space to add nuance and study to this space,” said Dr. Salmon. Adolescent consent laws for receiving the HPV vaccine – and most vaccines – vary by state and can be complicated. While some organizations like VaxTeen communicate directly with teenagers and young adults to counter possible misinformation and encourage those who are unvaccinated to catch up on vaccines as soon as they can, other groups like the Georgia Campaign for Adolescent Power and Potential are creating resources aimed at bridging the gap in HPV vaccine education directly between parents and teens.
Regardless of the approach, Working Group members agreed that materials should emphasize early action across every angle: beginning conversations about HPV with trusted health partners early on, receiving the vaccine by age nine if able, and the need for catching up on vaccines as early as possible once a gap is identified.
Gender Disparities in HPV Education
A final, common refrain during the roundtable was the lack of nuanced education on HPV’s risk to boys; girls are still placed at the center of the HPV vaccine conversation. Widening HPV education to discuss its related cancers could help explain how the HPV vaccine may protect boys from certain cancers – namely anal, penile, and oropharyngeal. For older males, the conversation should also include the signs and symptoms of HPV, so men can better recognize if they have been infected. “Women get a pap smear every three to five years, but boys do not get the same testing. They can be a carrier of HPV, even get warts, and not know,” Dr. Darville-Sanders said. HPV education, whether in the doctor’s office, with the school nurse, or within communities, must include prevention options for boys as much as for girls.
Even with benefit of annual women’s health checkups and regular testing for HPV and related cancers, the power of the HPV vaccine as a preventive health care tool for women cannot be over-stressed, the Working Group concluded. In addition to their own health, women’s role as health care decision makers for their families is also central to the HPV vaccine conversation and should be used as lens when creating education materials. For example, a reframing of the HPV vaccine as a way to protect children from cancer, independent of sexual activity, may go a long way in improving uptake as mothers and other caregivers make vaccination decisions.
As barriers in provider recommendations, caregiver hesitancy, lack of vaccine information, and negative vaccine perceptions for the HPV vaccine persist, the role of organizations, such as those included in SWHR’s HPV Working Group, are still sorely needed. SWHR will continue to work alongside these groups to advance awareness and increase science-based clinical and policy guidelines to protect the health and well-being of women, their families, and their communities.
SWHR’s Vaccine Program is supported by educational sponsorship from Merck. SWHR maintains editorial control and independence over educational content.