Patient Perception, Preferences and Participation
Everything you always wanted to know about HPV (but could not ask your doctor)

https://doi.org/10.1016/j.pec.2009.12.006Get rights and content

Abstract

Objective To investigate specific information needs of people who search for information about the human papillomavirus (HPV) on the Internet.

Methods We performed a qualitative analysis of the e-mail questions asked by the visitors of a website with evidence-based information about HPV. The website, hosted by Antwerp University, provided basic information on epidemiology and natural history of HPV in women and men, diagnostic and treatment options, screening, and vaccination. If visitors did not find an answer to their questions, they could mail their question to an e-mail address associated with the website.

Results We received 713 questions posed by 527 e-mail correspondents. The following themes emerged as most important: transmission of HPV, the HPV vaccine, the natural history of the virus, the vicious circle (re-infection between partners), HPV detection in men and women, treatment of men and women, incubation time, pregnancy/fertility, genital warts (in)fidelity, and symptoms of HPV infection.

Conclusion Both men and women are seeking health information on HPV on the Internet, often after being counseled by a health care provider.

Practice implications Practitioners should be prepared for questions on the themes that concern people most. Practitioners may play a role in guidance towards reliable sources of information.

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.

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