“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

Abnormal smear result

Colposcopy(diagnostic

investigation)

BiopsiesTreatment(LLETZ, ablation, punch biopsy)

Routine screening

Long term follow-up (10 yrs)

HPV testing

HPV testing

HPV testing

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

1. To explore the emotional responses of women undergoing HPV tests; and

2. To investigate the factors influencing information needs surrounding HPV

ApproachQualitative – 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 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

HPV knowledge

“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

Positive reactions• relief• reassurance • happiness

Negative reactions• worry / anxiety• regret / self-blame• shame / embarrassment / stigma

Factors influencing adverse emotional responses to HPV testing

Adverse emotional reactions

Low level of HPV knowledge

Awareness HPV is sexually transmitted

Awareness HPV is common

among those sexually active

Low HPV information

needs

High concern over abnormal smear result or

CIN

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 felt really ashamed even though… I never slept with

anybody else oh God..

I was really embarrassed and I was kind of oh God

how did I get this, I’ve only had two partners

……it’s like you must be sleeping around

…..Oh God, I shouldn’t have slept with all those

people

Factors influencing women’s HPV information needs

HPVInformation

needs

Amount of information

provided about HPV

Concerns surrounding

abnormal smear result or CIN

Previous negative

health care experience

Relation of HPV to other life

events

Awareness of HPV being sexually

transmitted

Factors influencing women’s HPV information needs

HPVInformation 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

Factors influencing women’s HPV information needs

HPVInformation 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

Factors influencing women’s HPV information needs

HPVInformation 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

Factors influencing women’s HPV information needs

HPVInformation 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

Factors influencing women’s HPV information needs

HPVInformation 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

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 HealthCERVIVA is funded by the Health Research Board