M O’Connor, L Costello, W Prendiville, J Murphy , L Sharp

“I don’t care what it’s called, I just want to know if I have cancer.” Women’s emotional responses and information needs after having an HPV test M O’Connor, L Costello, W Prendiville, J Murphy, L Sharp on behalf of the Irish Cervical Screening Research Consortium (CERVIVA)

HPV (Human papillomavirus) and cervical cancer • HPV infection very common • Over 100 different types; 30 - 40 genital types • Types 16 & 18 cause apx 75% of cervical cancer cases • HPV infection also linked to other genital and non-genital cancers HPV infection

Background to cervical screening Why screen for cervical cancer? • Cancer of the cervix is the second most common cancer in women worldwide • 529,828 cases & 275,128 deaths worldwide (IARC, Globocan, 2008) CervicalCheck • Ireland’s national cervical screening programme, launched in September 2008 • Target uptake of 80% (~apx 1.1million eligible women) • Women aged 25 - 60 receive free smears every 3 - 5 yrs

Cervical screening pathway HPV testing Routine screening HPV testing HPV testing Long term follow-up (10 yrs)

Background to HPV testing • Some studies suggest that testing positive for HPV can have an adverse psychological impact • Other research has focused on women’s knowledge of HPV and information needs surrounding HPV But………. • most studies were in pre-HPV vaccination era • many involved women asked to think hypothetically about undergoing HPV testing or women tested within research studies/trials • few studies specifically considered women tested in routine post-treatment setting

Study aims • To explore the emotional responses of women undergoing HPV tests; and • To investigate the factors influencing information needs surrounding HPV Approach Qualitative – exploring, in depth, women’s own experiences and views

Methods • Women who had HPV DNA tests performed at a large Dublin hospital • In-depth qualitative interviews conducted with women in January - May 2011 • Interviews were directed by a semi-structured topic guide • Interviews audio-recorded, transcribed verbatim and anonymised

Participants • 27 participants interviewed • The majority (71%) were married/in a relationship • 19 women were aged 30 - 49 years, 4 were aged <30 years • 20 women had completed third level education • 19 women lived in urban areas, 8 lived in rural locations in Dublin, Kildare, Laois, Offaly, Westmeath and Wicklow

HPV knowledge • HPV knowledge among women low • Some had never heard of HPV • Perception of very low public awareness of HPV • Women who had heard of HPV knew it is a common infection • Mix of knowledge of sexual nature of HPV and link between cell changes and cervical cancer • “I mean most women • know what a smear is, • I’d say alot of people • don’t know what HPV is.”

Emotional impact of HPV testing • Most women did not have an emotional reaction to HPV testing • Women who did experience an reaction • tested +ve and those who tested –ve • reaction to HPV itself (not the test) …[it’s] just another swab

Factors influencing adverse emotional responses to HPV testing

Emotional responses to HPV well I don’t care what it’s called, I don’t care whether it’s HPV or ABC, I just want to know if I have cancer dominant reaction But………. I was really embarrassed and I was kind of oh God how did I get this, I’ve only had two partners I felt really ashamed even though… I never slept with anybody else oh God.. …..Oh God, I shouldn’t have slept with all those people ……it’s like you must be sleeping around

Factors influencing women’s HPV information needs

Factors influencing women’s HPV information needs Amount of information provided about HPV • Women who described receiving more information often had more unanswered questions about HPV • Those that had more knowledge of HPV often had more unanswered questions about it • The more information given about HPV, the higher the information needs HPV Information needs

Factors influencing women’s HPV information needs Concerns surrounding abnormal smear result or CIN • Women perceived a diagnosis of CIN and issues surrounding abnormal cells as very serious • Some women were fearful that they had, or could develop, cervical cancer, making “getting rid” of their abnormal cells a higher priority than HPV • Women preoccupied by these concerns & had low HPV information needs HPV Information needs

Factors influencing women’s HPV information needs Previous negative health care experience • Some women disclosed previous bad experiences with care received in relation to cervical screening, pregnancy and other health issues • These women, in general, had high HPV information needs HPV Information needs

Factors influencing women’s HPV information needs Relation of HPV to other life events • Some women pre-occupied by concerns other than their abnormal cells (e.g. fertility concerns, family illness); these women had lower HPV information needs • For others, having an HPV test increased their information needs as it related to other issues in their lives at the time of their test HPV Information needs

Factors influencing women’s HPV information needs Awareness of HPV being sexually transmitted • Women who were aware of the link between HPV and sexual activity had a stronger desire for more information on HPV • Women who were not aware of the link had lower HPV information needs HPV Information needs

Women’s suggestions to improve the HPV test experience • Information posters at colposcopy clinics • Dedicated room to discuss/ask questions before test • Information leaflets & reputable websites • Information should not frighten women • Timing of delivery of information

Conclusions and implications • Poor knowledge levels among women • Emotional impact may not be as great as previous studies suggest • More information not necessarily better; one size won’t fit all • Timing of delivery of information is key

Acknowledgements • We thank the women who took part in the study • We are grateful to the staff at Tallaght hospital colposcopy clinic Further information: m.oconnor@ncri.ie The National Cancer Registry is funded by the Department of Health CERVIVA is funded by the Health Research Board

M O’Connor, L Costello, W Prendiville, J Murphy , L Sharp