Emotional Responses and Information Needs After HPV Testing
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M O’Connor, L Costello, W Prendiville,
J Murphy
, L Sharp
on behalf of the Irish Cervical Screening Research
Consortium (CERVIVA)
H
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(
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•
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
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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
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H
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t
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•
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
S
t
u
d
y
a
i
m
s
1.
To explore the emotional responses of
women undergoing HPV tests; and
2.
To investigate the factors influencing
information needs surrounding HPV
A
p
p
r
o
a
c
h
Qualitative – exploring, in depth, women’s own
experiences and views
M
e
t
h
o
d
s
•
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
P
a
r
t
i
c
i
p
a
n
t
s
•
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
H
P
V
k
n
o
w
l
e
d
g
e
“
I mean most women
know what a smear is,
I’d say alot of people
don’t know what HPV
is.”
E
m
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t
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n
a
l
i
m
p
a
c
t
o
f
H
P
V
t
e
s
t
i
n
g
•
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
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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
d
o
m
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n
a
n
t
r
e
a
c
t
i
o
n
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
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H
P
V
•
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
F
a
c
t
o
r
s
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l
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r
m
a
l
s
m
e
a
r
r
e
s
u
l
t
o
r
C
I
N
•
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
F
a
c
t
o
r
s
i
n
f
l
u
e
n
c
i
n
g
w
o
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a
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c
a
r
e
e
x
p
e
r
i
e
n
c
e
•
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
F
a
c
t
o
r
s
i
n
f
l
u
e
n
c
i
n
g
w
o
m
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H
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f
H
P
V
t
o
o
t
h
e
r
l
i
f
e
e
v
e
n
t
s
•
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
F
a
c
t
o
r
s
i
n
f
l
u
e
n
c
i
n
g
w
o
m
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H
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A
w
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s
s
o
f
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P
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g
s
e
x
u
a
l
l
y
t
r
a
n
s
m
i
t
t
e
d
•
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
W
o
m
e
n
’
s
s
u
g
g
e
s
t
i
o
n
s
t
o
i
m
p
r
o
v
e
t
h
e
H
P
V
t
e
s
t
e
x
p
e
r
i
e
n
c
e
•
Information posters at colposcopy clinics
•
Dedicated room to discuss/ask questions before test
•
Information leaflets & reputable websites
•
Information should not frighten women
•
T
i
m
i
n
g
o
f
d
e
l
i
v
e
r
y
o
f
i
n
f
o
r
m
a
t
i
o
n
C
o
n
c
l
u
s
i
o
n
s
a
n
d
i
m
p
l
i
c
a
t
i
o
n
s
•
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
A
c
k
n
o
w
l
e
d
g
e
m
e
n
t
s
•
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
Women's emotional responses and information needs following HPV testing, exploring factors influencing their experience. Study conducted through qualitative interviews with women in Dublin.
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Presentation Transcript
I dont care what its 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 HPV infection 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
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 Treatment (LLETZ, ablation, punch biopsy) Colposcopy (diagnostic investigation) Abnormal smear result Biopsies 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 1. To explore the emotional responses of women undergoing HPV tests; and 2. 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 Positive reactions relief reassurance happiness Negative reactions worry / anxiety regret / self-blame shame / embarrassment / stigma
Factors influencing adverse emotional responses to HPV testing Low level of HPV knowledge High concern over abnormal smear result or CIN Awareness HPV is sexually transmitted Adverse emotional reactions Awareness HPV is common among those sexually active Low HPV information needs
Emotional responses to HPV dominant reaction 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 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 womens HPV information needs Amount of information provided about HPV Awareness of HPV being sexually transmitted Concerns surrounding abnormal smear result or CIN HPV Information needs Previous negative health care experience Relation of HPV to other life events
Factors influencing womens HPV information needs Women who described receiving more information often had more unanswered questions about HPV Amount of information provided about HPV Those that had more knowledge of HPV often had more unanswered questions about it HPV Information needs The more information given about HPV, the higher the information needs
Factors influencing womens 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 HPV Information needs Women preoccupied by these concerns & had low HPV information needs
Factors influencing womens HPV information needs Some women disclosed previous bad experiences with care received in relation to cervical screening, pregnancy and other health issues Previous negative health care experience These women, in general, had high HPV information needs HPV Information needs
Factors influencing womens HPV information needs Some women pre-occupied by concerns other than their abnormal cells (e.g. fertility concerns, family illness); these women had lower HPV information needs Relation of HPV to other life events 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 womens 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
Womens 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
