BRIDGING THE COMMUNICATION GAP BETWEEN PRACTITIONERS AND THEIR PATIENTS: THE ROLE OF HPV AND ADVANCES IN CERVICAL CANCER PREVENTION

 

Marie Savard, MD

 

ABSTRACT

Traditionally, practitioners have recommended and women have passively accepted the annual Pap test as an important tool to "assure" a woman of a clean bill of health. With new knowledge about the role of high risk strains of HPV as a necessary cause of cervical cancer, along with new technologies such as the HPV test and the upcoming HPV vaccine, this patronizing approach to women's health is no longer acceptable. Practitioners must understand and effectively communicate to their patients the viral etiology of cervical cancer, the role of Pap and HPV testing, the benefits and possible outcomes of combined testing, and information about potential new technologies to eliminate cervical cancer.

 

Educating women and their practitioners about new advances in the prevention and early detection of cell changes and cervical cancer presents a significant challenge. There are many myths and misconceptions about the purpose and effectiveness of the Pap test, the role of HPV in cervical cancer, and new diagnostic tests that compromise the possibility of an informed and collaborative practitioner-patient relationship. Dr. Savard will dispel practitioner myths, such as HPV information causing fear in patients, inadequate reimbursement for HPV testing, insufficient time and resources for counseling patients, and loss of the annual visit; patient myths, including the belief that the Pap test is accurate and sufficient, confidence in doctors to provide the most appropriate tests, and trust that "no news is good news" in regard to test results; and, misconceptions surrounding screening guidelines in the new era of HPV testing. These myths and misconceptions will be discussed within the context of a recent survey from the Association of Reproductive Health Professionals, which evaluated patient and provider attitudes and perceptions of HPV and cervical cancer.

 

Dr. Savard also will discuss her "take charge" program of empowering patients to become fully informed about their health, specifically in regard to HPV and cervical cancer. She will offer ways practitioners and patients can work together towards the goal of providing women with the most up-to-date and best care. She will also briefly describe the role of policymakers and advocacy groups in helping inform and empower women with knowledge about HPV and cervical cancer. Only through a combination of grassroots efforts of women and advocacy, collaborative practitioner-patient partnerships, and work of policymakers and other experts can the goal of eliminating cervical cancer in our lifetimes be realized.

 

History and Evolution of Patient – Provider Relationships

To date, practitioners have recommended and women have passively and without complete understanding accepted an annual Pap test as an important tool to "assuring" women they are in good health. Many practitioners have established a routine with patients, offering a standard annual visit, which always includes a gynecological exam and a Pap test. Women have come to expect this test every year, often without knowledge or understanding of the role of Pap test and what it can and cannot detect. For many years, patients readily accepted diagnostics, treatments and the guidance of their healthcare providers, without taking responsibility for or becoming involved in decisions regarding their own health. With the increase in educational programs and the availability of medical information on the Internet, women have become more active participants in their healthcare decisions and more knowledgeable about new technologies available to improve their health. As the environment changes, practitioners must adapt their practices and cooperate with their informed (or misinformed) patients by educating them during their annual visits and involving patients in health decisions.

In addition, clinical guidelines, practice and perspectives are beginning to change regarding the role of HPV testing and its ability to improve screening sensitivity. Clinicians are also becoming more aware of the significant failure rate of the Pap smear. The nearly 100% negative predictive value of combined Pap and HPV testing, in combination with the near perfect cure rates of cervical disease if caught early, makes every cervical cancer death a failure of the health system.

 

Educating Practitioners and Dispelling Myths

Practitioners first need to understand HPV and its role in cervical cancer. They must be aware of the effectiveness of new screening tests and the role of vaccine-based prevention options before educating patients and involving them in shared decision-making. Many doctors are not yet aware of the role of HPV in cervical cancer, the natural history of HPV infections, the limitations of the Pap test, and the role of HPV testing. Once they are comfortable with the information, they can begin sharing knowledge with their patients. A survey by the Henry J. Kaiser Family Foundation found that only half of doctors discuss sexually transmitted diseases with all or most of their patients and among those, only 10 percent specifically mentioned HPV. With greater awareness about the link of HPV to cervical cancer, this omission is no longer an option.

There are a number of reasons healthcare providers resist changing their practices to incorporate HPV information and testing. Many doctors are not yet aware that the HPV test has been approved by the FDA for routine cervical cancer screening in women 30 and older. And even those who are aware may not offer the test out of fear that women will be needlessly alarmed if the test shows they carry the virus. Women are hearing about HPV, HPV testing, and more recently the HPV vaccines through the media and through their friends. In fact, women expect to learn about HPV. They resent paternalistic and patronizing providers and will not trust their providers if they learn about HPV from another trusted source. A recent study published in the British Journal of Cancer, "Making sense of information about cervical cancer screening: a qualitative study,"found that the way in which information is presented to women is crucial in minimizing the negative psychological impact of testing positive for HPV and ensuring that participation in screening remains high. Women were actually reassured when their doctors discussed HPV openly with them. They were particularly reassured to know that HPV is common, has no symptoms, can lay dormant for many years, can clear up on its own and need not raise concerns about transmission to sexual partners. Women also expect their providers to offer new technologies and to discuss important advances with them.

Healthcare providers often are concerned about the amount of time it will take them to incorporate new information and messaging into their already tight office visit, not giving them adequate time to truly counsel their patients about the intricacies of HPV and its role in cervical cancer. In fact, experience has proven that patients can be counseled about HPV testing and results effectively in a short amount of time, if the appropriate information is presented. Only a few basic facts are essential for dispelling a woman's misconceptions and providing her with enough material to be an informed patient. To truly provide an educational office environment, nurses and office staff should be prepared to answer questions and offer educational resources, including the wealth of information available on the Web.

Some practitioners may fear that the increased screening interval gained with the use of the HPV test will result in the loss of the annual visit, putting women at risk for other health issues. Women may still see their providers on an annual basis if their cervical screening interval is extended. In reality, interval extension affords time for increased emphasis on chronic disease screening, health risks and health behaviors. In addition, there are great benefits of having a periodic chance for women to talk with their doctors about any concerns or questions. Screening for cervical cancer, like other cancer screening such as for colon cancer, should now be conducted at intervals appropriate to a woman's risk for the disease.

 

Practitioners also are unaware of the widespread reimbursement in place for HPV testing. They express concern about problems with reimbursement as a reason for not adopting co-testing. In fact, the majority of all large regional and national payers in the United States, as well as Medicaid programs in 45 states plus the District of Columbia, cover HPV testing for both reflex testing and primary screening.

 

Educating Patients and Dispelling Myths

WomenÕs beliefs are widely varied about the etiology of cervical cancer and its relationship with sexual activity. According to a recent survey by the Association of Reproductive Health Professionals (ARHP), just 49 percent of women say they have heard of HPV and only 23 percent correctly identified HPV as the primary cause of cervical cancer[1]. Essential facts regarding HPV and cervical cancer include: 1) Cervical cancer is almost always caused by the human papillomavirus (HPV) 2) HPV is very common; 3) Having HPV does not mean a woman will have cervical cancer; 4) Cervical cancer is very rare; and 5) HPV status is not a marker of behavior or fidelity. These essential facts are often enough to provide women with the background necessary to ask further questions and open communications, paving the way for a collaborative patient-provider relationship.

Most women have been dutifully receiving their annual Pap test, often unaware of the purpose of and the effectiveness of the test. While the Pap test identifies cervical cell abnormalities, many women believe that a normal Pap test means they are free from any gynecological health problems, including sexually transmitted diseases and other gynecological cancers. Women trust their healthcare providers and expect not only the most up-to-date information, but also the most recent technologies available for improved health. Physicians have a responsibility to their patients to fulfill this sense of trust and offer this to women. The ARHP survey found that 88 percent of women rely on their provider for important information about reproductive/gynecological issues; yet, 81 percent say that their healthcare provider has never talked to them about the connection between HPV and cervical cancer.

Another issue with which both patients and practitioners contend is follow-up. Women often leave clinician offices and assume that unless they hear from their doctor, no problems exist; however, this is not always the case. Women need to understand the importance of keeping track of their records and asking for test results. As practitioners, we need to dispel the myth that "no news is good news," encouraging our patients to follow up with us for their results and talk to us about their meaning.

Women are eager to be given as much information as possible and to take a much more active role in managing their own health decisions. They want to know all there is to know about a specific condition and want to know how best to collaborate with their practitioners to get the best possible care.

 

Misconceptions Surrounding Screening and the Upcoming Vaccine

News of the development of an HPV vaccine has brought the link between the most common sexually transmitted infection, the human papillomavirus (HPV), and cervical cancer to the forefront. While the HPV vaccine offers women the hope of eliminating cervical cancer, it is still not yet approved. In the meantime, the importance of screening needs to remain highlighted and practitioners must learn how to incorporate advanced screening technologies into their current practice. Even when the vaccine is approved, it will not substitute the need for regular screening. Much like the Pap, if used alone, the vaccine would still leave thousands of women at risk for cervical cancer, either because they were infected with HPV prior to the introduction of the vaccine or because they have a high-risk HPV type that the vaccine cannot prevent. The HPV vaccine will not replace, but rather will enhance, the advanced technologies already available today to ensure the best defense against cervical cancer.

 

 

Counseling Principles for Practitioners

Physicians often face a number of challenges when educating women about HPV and new technologies, and implementing new screening options within an existing practice. A few basic principles in counseling will help practitioners overcome these issues.

• Use a matter-of-fact, non-judgmental tone when speaking with a patient about HPV and its relationship to cervical cancer. If a doctor is stressed about communicating a message, the patient will be stressed about the content of that message.
  
  

• Emphasis on how common the virus is and how rare cervical cancer is reassures women. Let them know that almost all women will get the virus, but few will develop cervical cancer.
  
  

• Don't assume that women understand the Pap test just because they have been getting screened for a number of years. Many women have misunderstandings about what the Pap is and what it is not. For women to understand how they can prevent cervical cancer, they will need to understand HPV, its role in cervical cancer, and the difference between Pap testing and HPV testing.

 

Some basic steps practitioners can follow when educating patients include[2]:

 

1)         Determine knowledge of HPV and address concerns. Like most women, your patient may not know what HPV is, how it is contracted or that there are different types of the virus. It is important to explain that there are over a hundred strains of HPV, and that the virus usually disappears on its own. It also may be necessary to define the difference between high- and low-risk strains and what they can cause. Stress that although HPV is common, cervical cancer is not, and remind patients that it's important not to be complacent – there are steps you can take to watch for the development of cell changes until the virus clears.

 

2)         Clear up misconceptions. Many women who first hear that they have a sexually transmitted infection – especially those in a monogamous relationship - can easily become upset, because they may think their partners have been unfaithful. As a result, testing positive for HPV often comes with a stigma. Patients must be informed that HPV can stay dormant in the body for months or even years before it becomes detectable, so it is important for women to be monitored for HPV even when they and their partners have maintained a long-term, monogamous relationship.

 

Open a dialogue with your patient about her knowledge on the topic and aim to dispel any inaccurate information she has. We need to stop referring to HPV as a sexually transmitted disease – after all – we don't tell women they are getting a Pap test to diagnose a sexually transmitted disease. If we did, the Pap test would never have gained such widespread acceptance and use – nor would we have saved so many lives.

 

3)         Discuss next steps and screening options. Explain to your patient who has a positive HPV test that she will have to be watched more closely to ensure that the HPV infection does not become a problem. Educate her on the use of the Pap and the HPV test to screen for HPV and signs of cervical cancer so she is aware of what is being done to her and how it will help ensure her good health for future visits.

 

Women will often ask what steps they can take to boost their immune systems and "fight off" a persistent infection. Some measures such as discontinuing smoking are very important for overall health status, whereas others such as taking a multivitamin or B-complex vitamin or discontinuing oral contraceptives may be reasonable but are not tested.

 

4)         Encourage a collaborative partnership between practitioner and patient. Give your patients an original copy of their Pap test and HPV test results, encouraging them to maintain their own medical files. Consider giving your patients a preprinted chart or checklist of important screening and diagnostic tests that they may need so that they too can keep track of results and assume more responsibility for their own health care.

Many resources are available to the clinician for self-education, education of their patients, and implementation of new screening and preventive technologies in their offices. Doing the research may take time, but in the end, will help save lives.

 

Opportunities to empower women

There are many things we can teach our patients to do to take a more active role in their health care.

 

1. Keep track of your own medical records

We no longer live in an era where we have just one primary care provider for our entire lives. The more doctors we see, the more information is lost in the shuffle.  Come to your doctor's visit prepared with copies of medical records, recent test results and family history information. Your doctor will have a better picture of your previous medical care and can keep it in mind for future treatment. Also, consider carrying an emergency medication information card with you at all times, which lists up-to-date medical conditions, medications, family history, emergency contacts, allergies, immunization status and information on advance directives.

 

2. Trust your instincts and ask questions

Medicine is a fast-paced field, with advancements and discoveries happening by the minute. It's impossible for doctors to be aware of everything new. If you see something in the news that might apply to your care, write it down and ask about it on your next visit.  If you experience any strange symptoms throughout the year, make sure you ask about those as well.  DonÕt be afraid to pull out a list or diary of symptoms, as these will likely affect your treatment and even which tests a doctor will administer.

 

3. Talk with your doctor about which tests are right for you

Along with the basics, don't be afraid to ask for the most up-to-date tests available. Although the most common screening method for cervical cancer is the Pap test, the liquid-based Pap is more accurate than the traditional Pap "smear." Women 30 and older, those most at risk for cervical cancer, should ask for the HPV test along with their Pap to find out if they have a high-risk form of the virus that could lead to cervical cancer. In fact, the HPV test, when used in combination with the Pap – has been proven more effective than the Pap alone in identifying women at risk for cervical cancer. Unfortunately, not all doctors are aware of this technology, and some don't believe in its necessity, thus making it essential for women to get educated about the most up-to-date medical information, screening technologies and treatments available.

 

5. Follow-up on test results!

Test results in even the most organized medical office can be lost, misplaced or even misfiled. The fact is this: no news is not necessarily good news. It's a good idea to give your doctor's office a self-addressed stamped envelop so all results can be mailed directly to you. If you don't receive results within three weeks give your doctor's office a call to follow up.

 

4. Monitor and manage your healthcare

For the 364 days of the year between visits, a woman must be responsible for her own health. So women should use the limited time they have with their doctor to review and set target goals for the coming year. This could include getting more exercise, tracking their menstrual cycle or doing a monthly self-breast exam.

 

Ways to Work Together

The explosion of national dialogue about HPV is likely to drive women to ask more questions regarding HPV, how it's transmitted and its link to cervical cancer. This forecast stresses the importance of being prepared to discuss the virus with patients in a way that will lessen the stigma, clear up misconceptions and define the differences between high- and low-risk strains. For those who do not ask questions, it is up to us – the practitioners - to engage women in conversations to educate them. While no doctor intentionally avoids having life-saving conversations with their patients, too often these discussions fall through the cracks because of the concern that the patient might not fully understand or will needlessly worry, or the physician is already working on an overbooked schedule.

 

Roles of Policymakers and Advocacy

Advocacy groups and policymakers can be of tremendous help to practitioners and patients.  The efforts of Women in Government and The Balm in Gilead are two such examples.  They have become actively engaged in the process of educating women about and cervical cancer in far-reaching campaigns to eliminate cervical cancer.  

•           Women In Government is a bi-partisan organization of women state legislators in the United States providing leadership opportunities, networking, expert forums and educational resources to address and resolve complex public policy issues. Women In Government launched their Challenge to Eliminate Cervical Cancer campaign in January 2004, encouraging states to become actively involved in taking a community approach to tackling cervical cancer in their states. Since the launch of the campaign, nearly all states throughout the U.S. have introduced and enacted legislation calling for the study of cervical cancer in an individual state, mandated insurance coverage of screening technologies for all women, and increased public awareness about HPV and cervical cancer. Most recently, Women In Government hosted an HPV and Cervical Cancer Summit, the largest cervical cancer gathering to date of U.S. state legislators, advocates, medical experts, and public policy officials.
•             The Balm In Gilead is a not-for-profit, non-governmental organization whose mission is improve the health status of people of the global African community by building the capacity of faith communities to address life-threatening diseases, initially focusing solely on HIV/AIDS and in 2005, expanding to include cervical cancer. The Balm In Gilead has worked to enable thousands of churches around the world to provide comprehensive educational programs and offer compassionate support to encourage education, screening, and treatment for diseases affecting the African community, thereby reducing health disparities around the world. The goal of the ISIS Project, the Balm's HPV and cervical cancer initiative, is to educate and empower Black women about HPV and cervical cancer. The ISIS Project tours the United States through the infrastructure of 3 historical Black church denominations, spreading the word about healthy sexuality and prevention and treatment of cervical cancer through advanced technologies.

Conclusion

Doctors need to educate themselves and their patients on the life-saving tests available to women now that will help them prevent cervical cancer in the future. Educating patients is a large part of ensuring they receive the best quality of care. Patients should be encouraged to become actively involved in their health care by empowering themselves with education about cervical cancer and the ways to prevent it. Through improved communication and shared decision-making, patients and their practitioners can assume a more collaborative and effective relationship. Utilizing the advances in technology and treatments along with improved communication and collaborative partnerships with patients, advocacy groups and policymakers, cervical cancer can be eliminated in the foreseeable future.