Patient Perception, Preferences and ParticipationEverything you always wanted to know about HPV (but could not ask your doctor)
Introduction
Cervical cancer is the second most common cancer in women worldwide [1], [2]. Cervical carcinogenesis is strongly linked to infection with oncogenic human papillomavirus (HPV)-types. HPV is widely acknowledged to be the most common genital sexually transmitted infection (STI) in developed countries [3]. Infection with HPV is mainly transient and evolves to cervical cancer only in a small proportion of women; it is assumed that cofactors such as smoking, oral contraception use and genetic factors are involved in persistence of HPV infection and progression to malignant lesions of the cervix [1], [2], [3], [4].
The role of HPV testing in cervical cancer screening policy is becoming more and more important. Guidelines for cervical cancer screening consistently recommend HPV testing for triage of ASCUS (Atypical Cells of Undetermined Significance) [5], [6]. Furthermore, the FDA approved HPV testing for primary screening in women over 30 years of age [7]. HPV testing offers a number of potential advantages to conventional cytological screening, such as increased sensitivity, avoiding an excessive number of colposcopies, and increasing screening intervals for HPV-negative women [8]. However, highlighting the association between sexual lifestyle and cervical cancer changes the way in which women who attend for cervical cancer screening need to be counseled; furthermore it may lead to stigma and guilt in patients who develop cancer. Even in women with normal cytology, but who tested positive for HPV, feelings of anxiety, embarrassment, distress and confusion were observed [9], [10]. It is estimated that HPV can be detected in 8.4% of women who have no cytological abnormalities [11]. Thus a large cohort of healthy women with a normal PAP smear are turned into patients. Although their cancer screening test is negative, they become patients because they are labelled “HPV-positive”, which means that they contracted a sexually transmittable, possibly cancerogenous, virus. These women need appropriate information in order to understand their condition and to moderate the negative psychological impact of their diagnosis. Both from our previous research in Belgium [12], [13], and investigations in other developed countries [14], it is clear that there is little knowledge of the role of HPV in cervical cancer development in the general population.
Health workers need to be prepared to give counseling on HPV-issues; therefore it is important to know which questions they may expect.
The University of Antwerp hosts a website with comprehensive, evidence-based, yet simple information on HPV for the Dutch public, with a possibility for people to ask questions by e-mail, if they needed any further information. We used this website, and more specifically the e-mailing option, to make an inventory of all questions and to explore qualitatively the specific information needs of people who search for information about HPV on the Internet.
Here we report on the most frequently asked questions and their answers.
Section snippets
Website design
The content for the website “HPV-questions and answers” (www.ua.ac.be/hpvinfo) was written by a researcher with a long-standing experience in HPV-related research (M Baay) and a general practitioner/researcher with a special interest in sexually transmitted diseases (V Verhoeven). The content was based on evidence from scientific literature; evidence on HPV itself as well as evidence on which information women need [10], [15], [16] were included. The content was read and approved by a delphi
Number of visitors to the website
The website was launched in October 2005, started slowly and got few visitors until 1 year later, when the first prophylactic vaccine was approved in Belgium (October 2006). At the same time clinical laboratories in Belgium gradually started to implement HPV-tests in PAP-smear protocols. At the date of submission of this paper (May 2009) the website had 17,570 unique visitors with a total of 129,662 page views, indicating that on average each visitor viewed 7.4 (out of the 10) pages. Repeat
Discussion
In this study, we used a website to make an inventory of specific information needs regarding HPV-related issues. This method of data collection intrinsically implies a number of limitations. Visitors of our website may not be representative for the general population, and people asking questions may differ from the other website visitors. The use of our website was limited to people who had Internet access, and who had an education level which allowed them to find and understand our website.
Acknowledgements
This study was financed in part by a Research Grant of the Fund for Scientific Research – Flanders (Belgium) to MFDB. The help of Ms. E. Grieten and Ms. M. Segers in building the website is gratefully acknowledged. Furthermore, we are grateful to all website visitors who took the time to fill in the webform.
References (40)
- et al.
The epidemiology of human papillomavirus infections
J Clin Virol
(2005) - et al.
The viral etiology of cervical cancer
Virus Res
(2002) - et al.
Worldwide prevalence and genotype distribution of cervical human papillomavirus DNA in women with normal cytology: a meta-analysis
Lancet Infect Dis.
(2007) - et al.
The male factor in cervical carcinogenesis: awareness of men in primary care
Prev Med
(2006) - et al.
Knowledge about infection with human papillomavirus: a systematic review
Prev Med
(2008) - et al.
Preferences for sources of information about abnormal Pap tests and HPV in women tested for HPV
Prev Med
(2006) - et al.
General practitioners’ perception of risk factors for cervical cancer development: consequences for patient education
Patient Educ Couns
(2006) - et al.
Prospective follow-up suggests similar risk of subsequent cervical intraepithelial neoplasia grade 2 or 3 among women with cervical intraepithelial neoplasia grade 1 or negative colposcopy and directed biopsy
Am J Obstet Gynecol
(2003) New epidemiology of human papillomavirus infection and cervical neoplasia
J Natl Cancer Inst
(1995)- et al.
The epidemiology of genital human papillomavirus infection
Vaccine
(2006)
2001 consensus guidelines for the management of women with cervical cytological abnormalities
J Amer Med Assoc
Virologic versus cytologic triage of women with equivocal Pap smears: a meta-analysis of the accuracy to detect high-grade intraepithelial neoplasia
J Natl Cancer Inst
Cost-effectiveness of human papillomavirus DNA testing for cervical cancer screening in women aged 30 years or more
Obstet Gynaecol
Comparison of three management strategies for patients with atypical squamous cells of undetermined significance: baseline results from a randomized trial
J Natl Cancer Inst
Testing positive for human papillomavirus in routine cervical screening: examination of psychosocial impact
BJOG
Women's desired information about human papillomavirus
Cancer
Risk factors for cervical cancer development: what do women think?
Sex Health
Information and cervical screening: a qualitative study of women's awareness, understanding and information needs about HPV
J Med Screen
Australian women's needs and preferences for information about human papillomavirus in cervical screening
J Med Screen
Cited by (28)
Human papillomavirus knowledge and vaccine acceptability among adolescents in a Greek region
2017, Public HealthCitation Excerpt :This is also the case in other countries. In Belgium, for instance, people got their information from websites, therefore raising the need for practitioners to provide guidance toward reliable information.30 In Marseille, 54.4% and 53.7% of high school and university students received information from their doctors and the media, while only 3.4% from school.25
HPV knowledge gaps and information seeking by oral cancer patients
2016, Oral OncologyCitation Excerpt :HPV is the most common sexually transmitted infection (STI) in the U.S., and is a cause of approximately 5% of all cancers worldwide each year [11,15–17]. After a diagnosis of a cancer caused by HPV, patients may express concerns over their diagnosis of HPV infection [18–20]. Some clinicians report that their HPV knowledge base is inadequate to address patient concerns, or that they feel uncomfortable with discussions about sexual behavior [21–23].
Knowledge and awareness of HPV and the HPV vaccine among young women in the first routinely vaccinated cohort in England
2013, VaccineCitation Excerpt :Information covering these areas was provided in a leaflet published by the Department of Health [2], but it seems that three years on, girls had retained relatively little of the detail. There is some literature identifying problems with information provision; evidence from the US suggests that the information physicians provide about HPV and the vaccine can be limited [29], and research conducted in Belgium found that patients seek HPV-related information on the internet, even after speaking to their health care provider [30]. In the school-based programme in the UK, information provision relies primarily on a written leaflet rather than interactions with health professionals, and little is known about what nurses delivering the vaccine tell girls as they are being vaccinated.
Vaccine counseling: A content analysis of patient-physician discussions regarding human papilloma virus vaccine
2011, VaccineCitation Excerpt :Our study demonstrated that some US physicians provide limited information regarding HPV infection and/or vaccine to patients and parents regarding the HPV vaccine, suggesting patients may not receive information needed to make a fully informed decision regarding the vaccine. This finding is consistent with other HPV vaccine studies [39]. Information sharing is a critical component of high quality communication and additional evaluation of the relationship between the amount and type of vaccine information provided and subsequent vaccine uptake in a larger sample, or using a quasi-experimental design, may provide insight about the impact that the nature of discussions has on vaccine uptake.
“You are always left with doubts”: information access among HPV-positive women in Greater Buenos Aires
2023, Revista de Salud Publica