GILBERT, LISA K. PhD*; ALEXANDER, LINDA PhD, FAAN†; GROSSHANS, JOANNE F.*; JOLLEY, LEIGH*
From the *American Social Health Association (ASHA), Research Triangle Park, North Carolina, and †Digene Corporation, Gaithersburg, Maryland
ASHA extends appreciation to the following: the thousands of hotline callers and e-mail/letter writers who convey their concerns and share their unique needs with us; the ASHA staff members for their data and participation; the ASHA National HPV and Cervical Cancer Prevention Resource Center Scientific Advisory Board for its assistance in reviewing the questions and answers for scientific accuracy; and the many individuals, foundations, corporations, and state and federal governments who contribute financial support to the American Social Health Association.
Reprint requests: Lisa Gilbert, ASHA, P.O. Box 13827, Research Triangle Park, NC 27713.
Received May 9, 2002,
revised August 2, 2002, and accepted August 5, 2002.
EACH DAY during the year 2000, more than 13,700 people (patients, providers, the public, policy-makers, and the media) accessed information about sexually transmitted diseases (STDs) from the American Social Health Association (ASHA). Often, these people sought answers, clarification, and clinical consensus about human papillomavirus (HPV), perhaps because of increased research interests and publications or heightened awareness of new HPV diagnostic and therapeutic technologies. Unfortunately, answers to HPV questions can be complex, confusing, easily misunderstood, and in some cases unanswerable because of equivocal research results or a lack of studies altogether. After the National HPV and Cervical Cancer Prevention Resource Center (HPV RC) was established in 1999, a need emerged to compile the most frequently asked HPV questions and to develop straightforward and accurate answers to these questions.
This study consisted of two components: a content analysis of frequently asked questions (FAQs) and a consensus process for developing simple but medically accurate answers to the questions. To compile the most frequently asked HPV questions, anecdotal data were collected from four ASHA HPV RC staff members who, collectively, answered more than 4200 calls, 580 e-mails, 50 letters, and 220 lecture questions over a 9-month period. The former HPV Hotline Manager, the current HPV Resource Center Manager, the former President and CEO, and the former hpv news editor were asked to submit the 10 most frequently asked questions about HPV. Responses were summarized to capture the spirit of specific questions, categorized, and then analyzed by frequency. The top 10 questions were redistributed to the same ASHA staff members to answer. Their answers, which varied only slightly across participants, were summarized.
The second component was undertaken to ensure scientific accuracy of the answers. Three rounds of reviews were conducted to obtain consensus answers to the 10 FAQs. First, in October 2000, the 10 FAQs and answers were sent to and reviewed by three HPV and cervical cancer prevention experts, internationally recognized for their work in HPV. These three, representatives from clinical practice, academic scientific research, and the CDC, participated in a telephone conference call to discuss modifications and attempted to reach consensus on accurate answers. On the basis of the experts’ feedback, both the questions and the answers were revised and sent to the HPV RC Executive Medical Director, J. Thomas Cox, MD, a practicing clinical and research expert. The document, revised according to Dr. Cox's comments, was sent to ASHA's HPV RC Scientific Advisory Committee before the biannual meeting, which was conducted by teleconference call in March 2001. Twelve world-renowned HPV researchers, scholars, clinicians, and public health educators participated in crafting the final answers. Table 1 describes the committee membership, affiliations, and credentials of contributing participants.
This process yielded succinct and accurate answers to the 10 most frequently asked questions about HPV:
(1) “How, when, or from whom did I get HPV?” Genital HPV is primarily a sexually transmitted virus. It is usually impossible to know from whom or when one acquired HPV because most people don't know they have it. HPV is very common, one of the most common STDs.
(2) “Will HPV affect a pregnancy or a baby?” Most treatments for cervical dysplasia will leave the cervix intact enough to preserve fertility. During pregnancy, warts and lesions may grow faster. Warts may have to be removed if they are bleeding or obstructing the birth canal. HPV is rarely passed on from mother to child; in rare instances, HPV types 6 and 11 can cause wartlike growths in the throat; this condition is called Juvenile Onset Recurrent Respiratory Papillomatosis.
(3) “Can a person get or give HPV through oral sex or from hands?” Although HPV may be transmitted this way, it has been impossible to prove that it happens. Recent studies indicate a relationship between HPV and some head and neck cancers, but the route of acquisition is not clear.
(4) “How can I get tested for HPV?” Warts are diagnosed by a clinical visual inspection. In women, HPV-related cervical lesions (dysplasia) can be detected by Papanicolaou (Pap) smears. Women with uncertain Pap smears may undergo HPV testing or repeated Pap screening. There is no FDA-approved screening test for detecting HPV in men.
(5) “Will I always have HPV?” A healthy immune system suppresses the virus. It is difficult to predict when HPV is no longer contagious. Experts disagree on whether the virus is eliminated from the body or whether it is reduced to undetectable levels.
(6) “How can I prevent giving or getting HPV?” Lifetime mutual monogamy and abstinence are the best possibilities for prevention. Most sexually active people will get HPV. Condoms prevent many bacterial and viral infections, but if HPV is present on uncovered skin, transmission is possible.
(7) “Can partners reinfect each other?” Reinfection with the same type of HPV is unlikely; however, no studies have been conducted regarding reinfection or the effects of treatment on infectivity. Partners are likely to share the same HPV type. Exposure to the same HPV types does not appear to cause a person to experience more symptoms.
(8) “Does HPV cause cervical cancer?” HPV causes cervical cancer, but regular screening and appropriate follow-up treatment prevent most women from getting cervical cancer. Other factors (immune system, other STDs, smoking, genetics, number of partners, hormonal contraceptive use) might increase the risk of cancer.
(9) “What should I tell my partner about HPV?” Most sexually active people will get HPV. For most people, the signs and symptoms of HPV are only temporary. The majority of people do not develop symptoms; therefore, they do not know they are infected. Understanding the psychological, social, and physical impact of HPV will help put the virus in perspective.
(10) “What are the best treatment options for HPV?” The human papillomavirus itself is never treated; however, symptoms and signs of the virus are. Providers treat warts by freezing, burning, or cutting them off or by prescribing creams that are self-applied. Providers usually do not treat minor Pap smear abnormalities because most will go away on their own. The most common treatments for abnormal Pap smears are cryotherapy (freezing of abnormal cells) or LEEP (the excision of the abnormal cells). Patients should discuss all treatment options with their provider before deciding on one treatment.
This study was essential because HPV information can be complex, controversial, and/or limited, yet thousands of people are seeking answers. Summarizing and simplifying the questions, as well as arriving at consensus answers, is the beginning of an ongoing process. This information provides up-to-date, accurate, practical answers to the questions most often asked by patients, providers, and others. Most patients will find the questions and answers adequate, comprehensive, and comprehensible, which may help allay their and providers’ discomfort and anxiety. Furthermore, the questions and answers can serve as a valuable reference for providers to use inpatient counseling sessions, helping patients understand that their questions and concerns are very common. Finally, it may be helpful for clinicians to provide copies of the questions and answers to their patients in anticipation of future concerns or partner considerations. Posting this information on ASHA's Web site, publishing it in hpv news, and disseminating the information via other modes of communication can answer many of the most common questions that thousands of people, including policy-makers and the media, have about HPV.