Background
The development of HPV vaccination and the introduction of immunisation programmes promises the greatest impact to date on the primary prevention of cervical cancer and other HPV-related diseases [
1]. Both licenced vaccines are specific to high-risk HPV 16 and 18 [
2,
3], and with 30% of cervical cancers caused by other high-risk HPV genotypes [
4], there remains a role for secondary prevention (such as cervical screening).
In Scotland, women born after 1/9/1990 have been offered HPV immunisation in catch-up programmes between the ages of 14 and 17 years or school-based programmes at age 11 to 13 years [
4,
5]. Prior to receiving the HPV vaccine, young women and their parents/guardians receive an information booklet which provides information on the vaccine and its role in preventing cervical cancer. This states that the vaccine only protects against two strains of HPV that can lead to cervical cancer, and stresses the importance of attending cervical screening [
6]
. It is not known to what extent this information is read or understood.
In Scotland, at the age of 20 years and 3 months, women are invited to attend for cervical screening [
7]. A national information leaflet is sent with the invitation and includes information about the need for screening; what happens during an appointment; the implications of an abnormal result; information on cervical cancer and again states that even if they have received the HPV vaccination, they should still attend regular cervical screening [
8]. Following screening, and as a result of abnormal cytology, some women will be referred for colposcopy [
8]. Local information leaflets sent prior to colposcopy aim to inform women on what to expect during their appointment and to provide information on their diagnosis of abnormal cell changes [
9].
Whilst information leaflets about screening and colposcopy have usually been developed with lay involvement, there has been limited research into the information needs of vaccinated women, and it is not clear whether their information needs are met by existing literature. As vaccinated women in Scotland are now being invited to attend cervical screening (screening starts at age 20 [
10]), there is an opportunity to investigate whether vaccinated women have different concerns or information needs. This study aims to address this gap in current knowledge.
Methods
We conducted a semi-structured interview-based qualitative study involving young women attending colposcopy.
Participants
All English-speaking women born after 1/9/1990 with abnormal cervical cytology and who had been referred to colposcopy at a regional colposcopy clinic were eligible to take part. An invitation to participate in the study was sent to them prior to their clinic visit. Women were offered either a ‘face to face’ or a telephone interview after their colposcopy visit.
Interviews
A topic guide was developed and piloted following a literature review [
10‐
13] to explore women’s knowledge and understanding around cervical screening, colposcopy and the HPV vaccine. The topic guide covered areas such as knowledge and understanding of HPV, cervical cancer, cervical screening, information received and information needs. Sample questions included – ‘What do you know about HPV?’, ‘How was your colposcopy experience?’, ‘Was the information provided to you helpful?’
Informed written consent was sought prior to interview. Interviews were audio-recorded, transcribed verbatim and anonymised. All interviews took place after participants had attended colposcopy. Participant characteristics (HPV vaccination status, including type, number of doses and dates of delivery, and referral cytology) were obtained from screening records held in the Scottish Cervical Call Recall System (SCCRS).
Analysis
Analysis of transcripts started after the first participant had been interviewed and continued throughout the interview phase of the project. All transcripts were analysed thematically with themes and associated quotes logged in a Microsoft Office Spreadsheet. To ensure coding validity, three transcripts were coded separately by two independent researchers and the main coding structure was agreed upon. This coding was then applied to all further transcripts. Any additional codes were added as the analysis progressed. After 13 interviews, it appeared that no new themes were emerging; two final participants were interviewed to confirm data saturation.
Approvals
The study was sponsored by the University of Aberdeen. Ethical approval was granted in writing by the North of Scotland Research Ethics Committee (reference number 13/NS/0156). NHS Grampian provided R&D management approval for the study.
Results
Forty-three women were identified as eligible to join this study. Of these, 19 consented to take part and 15 were interviewed. Three women agreed to telephone interview but did not answer the telephone for the scheduled interview and one woman did not attend her face-to-face interview.
Fifteen interviews were carried out between February and March 2014: eight face-to-face and seven telephone interviews. The mean length of interview was 18 min (range 15.5–22). The mean age of participants was 21.5 years (range 20–23 years). All participants were interviewed within 9 days of colposcopy with the exception of one who was interviewed 22 days later.
Of the 15 participants interviewed, 13 had received the HPV vaccination and two were unvaccinated. The first unvaccinated participant had not received the vaccine as she lived abroad where the vaccine was unavailable; the second completed her secondary education in 2008 and did not take up the offer of vaccination from her General Practitioner. Two of the vaccinated participants could not recall their immunisation status and a further three could not correctly recall their number of received doses – but this information was confirmed on SCCRS for all participants.
Knowledge and understanding about HPV and cervical cancer
All participants had heard of HPV. All participants identified that the majority of women are likely to be infected at some time in their lives with a HPV infection and stated that HPV is common - It’s [HPV] like a really, really, really common infection that most people get once in a lifetime. Many participants (10 out of 15) were aware that there are many different strains of HPV and the majority of women discussed that HPV is a sexually transmitted infection. Two participants were unable to identify the mode of transmission of a HPV infection. Participants discussed how a HPV infection was likely to resolve spontaneously without intervention but some ‘stubborn’ cases may progress into abnormal cervical cells.
Of the 15 participants interviewed, 13 could identify that HPV was responsible for the change in cervical cells that may lead to cervical cancer - Human Papillomavirus, it can create cells which can become cancerous, it’s the nature of the virus to cause cervical cancer. All participants suggested that cervical cancer was common and more likely to occur in younger women- It’s quite common in the under 50’s anyway. It’s a cancer of younger people.
Knowledge and understanding about the HPV vaccination
Two thirds of participants (10/15) understood that the vaccine did not protect against all strains of HPV, but prevented against some types that cause cervical cancer - The vaccine is supposed to protect you against certain strains of virus. It can’t protect you against all the strains but against the main ones that cause cervical cancer. The remaining five participants discussed how they thought the vaccine provided them with complete protection against all strains of HPV – I assumed the vaccine would be 100%. I knew that it technically wouldn’t be but I thought it would be like 99.999% effective. These five participants were asked what they thought about the effectiveness of the vaccine in light of their abnormal cytology and all expressed emotions of disappointment and lack of confidence in the vaccine- The vaccine was a waste of time. I would say it’s pointless and it’s not doing what it’s supposed to. Interestingly, these five participants also expressed negative emotions regarding their colposcopy experience.
When discussing HPV vaccination, one participant expressed that she could not recall receiving any information at the time of her vaccination or reading about it in an information booklet – I don’t remember being in school and being told this [vaccine] is 94% effective or whatever. I don’t remember being told anything.
Rationalising an abnormal cytology
Considering the ten participants that acknowledged the effectiveness of the HPV vaccine, only two women understood that they were likely to be infected with a type other than 16 and 18 -There are other strains that cause cervical cancer. Because the vaccine only covers two of the HPV infections. Just the big ones.
The other eight participants rationalised their abnormal test result by creating assumptions about the vaccine. Several participants suggested that they were the first group of girls to receive the vaccine, and as a result, it may not have been effective at the time -My year was the first year […] Maybe it will improve in years to come. The women who expressed these ideas were amongst the oldest in the study and mentioned phrases such as ‘test group’ and ‘Guinea-pig group’.
Another participant suggested the original vaccine was not effective and needed improvement. She mentioned that other young women may assume they are completely protected against HPV by the original vaccine -
It’s different now. It’s been researched and changed. […] I hope that other girls aren’t thinking ‘Well I’m fine because I’ve got it [vaccination]’. This participant may be referring to the change in vaccine type used in the UK: In 2012 the bivalent vaccine (protecting against HPV 16 and 18) was replaced with a quadrivalent vaccine, which protects against HPV 6 and 11 (types which cause HPV related genital warts) [
14].
The majority of participants agreed that they would still promote the HPV vaccine to young girls regardless of their own experiences of HPV - I still think it’s worthwhile getting it [vaccine]. Obviously it wasn’t effective for me but I wouldn’t change it looking back.
One participant reasonably suggested that she may have already had a HPV infection prior to her vaccination - Well obviously it’s [vaccination] not been effective for me but that’s probably because I might have had HPV before it.
Participants were asked whether the information leaflets they received regarding HPV vaccination, cervical screening and colposcopy were useful or reassuring, and whether they would recommend a change to the information.
Several women indicated that they read the leaflets but were still unsure what to expect during a cervical screening or colposcopy appointment: I don’t think any of the booklets you get for your appointments are useful. It doesn’t explain enough about what’s going on in depth. If you’re going for something like that [colposcopy], you want to know a lot more about it and understand everything about. However, none of the woman identified any specific additional information that could be included in the screening or colposcopy leaflets.
In terms of improving the information leaflets, particularly the colposcopy information booklet, several women suggested that the leaflet could be made more attractive and more inviting to read- It’s very basic. It’s not very interactive. The cervical screening book is [interesting] but the colposcopy one wasn’t very interesting. Three participants felt that the information they received on HPV was lacking and they felt the need to undertake their own research- Well I did do some research on it ‘cause I didn’t know what it [HPV and abnormal cells] was. I got my information probably the worst way, from Google.
Several women thought information on HPV and cervical screening should be introduced into school teaching and television advertisements - Adverts on the TV and then probably classes at school to teach more about it [HPV infection]. More than they would have before.
Conclusion
The information and support needs of young vaccinated women attending colposcopy are not fully met, leaving women with unanswered questions particularly around the effectiveness of the vaccine in relation to their cervical abnormalities. With increasing numbers of women entering the screening programme, it is timely to review the information available to these women.
Acknowledgements
The University of Aberdeen and Aberdeen Royal Infirmary for the opportunity to undertake research at an undergraduate level. We are grateful to all the women who took part in this study.