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Health services research
Original research
Levels of anxiety and distress following receipt of positive screening tests in Australia’s HPV-based cervical screening programme: a cross-sectional survey
  1. Rachael Helen Dodd1,
  2. Olivia Mac1,
  3. Julia M L Brotherton2,3,
  4. Erin Cvejic1,
  5. Kirsten J McCaffery1
  1. 1 Faculty of Medicine and Health, School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
  2. 2 VCS Population Health, Victorian Cytology Service, Carlton South, Victoria, Australia
  3. 3 Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia
  1. Correspondence to Dr Rachael Helen Dodd, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia; rachael.dodd{at}sydney.edu.au

Abstract

Objective From December 2017, the Australian National Cervical Screening Program commenced 5 yearly primary human papillomavirus (HPV) screening; one of the first high-income countries to implement primary HPV screening. This study aimed to examine the psychosocial impact of self-reporting testing HPV positive in a sample of women screened since the renewal of the programme.

Methods Women in Australia aged 25–74 years who reported participating in cervical screening since December 2017 were recruited through an online market research company to complete a cross-sectional survey. The primary outcomes were anxiety and general distress.

Results 1004 women completed the online survey; 80.9% reported testing HPV negative (HPV−), 6.5% reported testing HPV positive (HPV+) and 12.9% did not know/remember their test result. Women who reported testing HPV+ had significantly poorer psychological outcomes on a range of measures. Those who reported testing HPV+ had higher anxiety scores (53.03 vs 43.58 out of 80, p<0.001), showed more general distress (3.94 vs 2.52 out of 12, p=0.004), concern about their test result (5.02 vs 2.37, p<0.001), expressed greater distress about their test result (7.06 vs 4.74, p<0.001) and cancer worry (quite or very worried 35.4% vs 11.6%, p<0.001) than women who reported testing HPV−. Concern regarding test results was also significantly higher in women who did not know/remember their test result (3.20 vs 2.37, p<0.001) compared with women who reported testing HPV−. Women who reported testing HPV+ had greater knowledge of HPV (9.25 vs 6.62, p<0.001) and HPV testing (2.44 vs 1.30, p<0.001) than women who reported testing HPV−.

Conclusions Receipt of an HPV+ test result was associated with high levels of anxiety and distress, which reached clinical significance. Further work is needed to understand whether distress and concern could be reduced by ensuring all women receive high-quality standardised information with their results or by other interventions.

  • cervical cytology
  • screening
  • HPV

https://doi.org/10.1136/sextrans-2019-054290

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    Introduction

    Australia is one of the first high-income countries to implement primary human papillomavirus (HPV)-based screening, ahead of the USA, UK, Canada and New Zealand. Primary HPV testing has recently become one of the recommended options for cervical screening in the USA, but patients may need to request it from their physicians,1 many of whom use cotesting (HPV and cytology) every 5 years for women aged 30–65 years.2 Primary HPV testing is currently being rolled out in England by the National Health Service Cervical Screening Programme.3 Australia differs from other countries as it uses partial HPV genotyping (HPV 16/18; HPV not 16/18), and this information, along with cytology, can provide women with their risk of a significant cervical abnormality.

    In December 2017, the Australian National Cervical Screening Program (NCSP) began offering HPV-based cervical screening to women aged 25–74 years on a 5 yearly basis.4 The changes to the NCSP, which previously offered screening 2 yearly using cervical cytology (Pap) to women aged 18–69 years, were in response to several factors. These included the high uptake of HPV vaccination in Australian women and subsequent decreases in HPV infection and cervical abnormalities; evidence that HPV testing has higher sensitivity to detect cervical abnormalities and more effectively prevents cervical cancer than Pap smears; and economic modelling demonstrating that HPV-based screening would be both more effective and less costly.4

    Australian women have shown significant concerns about the recent changes to the NCSP, relating mainly to concerns about ‘missed’ early detection with an extended screening interval (from 2 years to 5 years), and the later start age for screening (from 18–20 to 25 years),5 consistent with earlier concerns expressed by Canadian and Australian women.6 7 These Australian women tended to overlook the change in cervical screening technology (from cytology-based testing to primary HPV testing with partial genotyping),5 which justifies these changes. Focus group findings supported the need for women to have clear and coherent information prior to implementing significant programme changes. They identified what information women sought, as well as what information is helpful in explaining the changes to the programme.8 Together these studies suggest that many Australian women may have suboptimal understanding of the renewed NCSP.

    Relatedly, it is important to explore how well women understand their HPV test results and the potential implications of these results. Testing HPV+ can be associated with a host of negative psychosocial impacts for women including anxiety and distress, feelings of stigma, embarrassment and confusion, as well as concerns about their sexual relationships in terms of trust, fidelity and blame due to the sexually transmitted nature of HPV.9

    This study aims to examine the psychosocial impact of primary HPV testing and understanding of these results in a sample of women residing in Australia who have undergone screening since the implementation of the renewed NCSP in December 2017.

    Materials and methods

    Sample

    Eligible participants were women residing in Australia aged 25–74 years who had undergone cervical screening since 1 December 2017 under the renewed NCSP and were able to provide informed written consent for research. Women were excluded if they had no capacity to consent, had a previous diagnosis of cervical cancer or had a hysterectomy.

    Procedure

    Participants were recruited through a market research company (Dynata) during December 2018. Dynata has access to a database of 600 000 members in Australia whom they can approach to find participants who meet eligibility criteria for research studies. Dynata operates a points-based system where participants receive points as modest compensation for the completion of surveys, which can be redeemed for items such as gift vouchers, donations to charities or cash. Participants listed on their database have already indicated a willingness to participate in online research.

    Dynata approached 96 700 women to complete this survey. Women accessed a web-link to direct them to read the participant invitation statement, provide their written consent to participate (via a tick-box) and then complete the cross-sectional survey eliciting sociodemographic, clinical and other background information.

    Measures

    Participants completed sociodemographic and clinical information adapted from previous studies of cervical screening attitudes in women/patients.6 7 Primary outcomes were measured using the validated State-Trait Anxiety Inventory (STAI-Y-6)10 and General Health Questionnaire (GHQ-12).11 Secondary outcomes included psychosexual functioning (modified versions of the Psychosocial Effects of Abnormal Pap Smears Questionnaire short-form (PEAPS-Q-5)12 and Cervical Screening Questionnaire),13 cancer worry, understanding of HPV results,14 perceived risk of developing cervical cancer,15 concern regarding screening results,16 future screening intention and knowledge of HPV and HPV testing.17

    Sample size

    Sample size was calculated to achieve a minimum number who reported testing HPV+ to potentially approach for further interview. To obtain at least nine individuals for this purpose, and assuming a minimum 20% of eligible individuals consent to be interviewed, approximately 45 individuals who report testing HPV+ are required. Given published incidence estimates of screened HPV+ in other high-income countries of approximately 6%,18 a minimum total sample size of 1000 individuals would provide a lower bound for the 95% confidence interval (CI) of 4.5% (ie, 45 participants) reporting testing HPV+.

    Statistical analysis

    Data were analysed using SPSS V.24. Descriptive statistics summarise the sample characteristics, grouped based on self-reported HPV screening result: HPV+, HPV− or HPV unknown. Analyses of variance were conducted to compare the primary and secondary outcomes and analyses of covariance to adjust for age. The adjusted analyses were not appreciably different in means and CIs when adjusting for age; therefore, unadjusted data are presented. Post hoc comparisons tested for between-group differences where indicated. χ2 tests were conducted to test for differences in categorical variables. For knowledge, women were given a score of 0 and not asked any further items if they reported not having heard of either HPV or HPV testing before the survey.

    P values less than 0.05 were considered statistically significant. Effect sizes (d) were calculated using Cohen’s formula19 with d=0.2 considered small, d=0.5 medium and d=0.8 a large effect size.

    Results

    Participant characteristics

    Of the 96 700 women who were sent email invitations, 3122 clicked through to the survey and 2305 agreed to participate. Of these, 1045 women were eligible, 1026 completed the survey and 1004 were included in the analysis (online supplementary figure 1). Twenty-two women were removed from the analysis as they did not disclose a test result.

    Supplemental material

    Almost 40% of women had screened within the last 6 months and 60.1% 6–12 months prior to the survey. Women had a mean age of 45 (SD=14.2) years. A third of women had a university degree (n=324, 32.3%), 33% (n=332) were in full-time work and most were married or living with a partner (n=685, 68% table 1). The majority (81.2%, n=815) were Australian born, with 2.3% (n=19) identifying as Aboriginal or Torres Strait Islander. Sixty-five women (6.5%) reported testing HPV+ at their most recent cervical screening test, 812 (80.9%) HPV− and 127 (12.6%) could not remember/did not know. Almost 30% (n=299) reported having had the HPV vaccination and 94% had attended cervical screening previously; 74% of these reported regular screening (every 2 years).

    View this table:
    Table 1

    Sample characteristics

    General anxiety and distress

    The distribution of the psychological measures and mean scores are described in table 2. Women who reported testing HPV+ had significantly higher mean anxiety scores compared with women reporting HPV− (mean difference (MD)=9.45, 95% CI 5.06 to 13.83, p<0.001; d=0.64) or HPV unknown (MD=7.86, 95% CI 2.67 to 13.04, p<0.001; table 3) with large absolute differences in their mean scores. Women who reported testing HPV+ had significantly higher general distress than women who screened HPV− (MD=1.42, 95% CI 0.36 to 2.48, p<0.005; d=0.42; table 3).

    View this table:
    Table 2

    Distribution and interpretation of psychosocial measures

    View this table:
    Table 3

    Psychosocial outcomes

    Cervical screening specific psychological impact

    Among the 65 women who reported testing HPV+, the mean score on the PEAPS-Q was 6.14 (95% CI 5.27 to 7.01; table 2). Women who reported testing HPV+ had significantly higher emotional distress than women who reported HPV− (MD=2.32, 95% CI 1.77 to 2.88, p<0.001) and HPV unknown (MD=1.78, 95% CI 1.13 to 2.44, p<0.001), as measured by the adapted Cervical Screening Questionnaire (CSQ; table 3). A significantly greater proportion of women who reported testing HPV+ reported feeling worse than usual about their: gynaecological health (p<0.001), fertility (p<0.001), interest in sex (p<0.001), fearful about cervical cancer (p<0.001) and future health (p<0.001) compared with women who reported HPV− (figure 1) with large absolute differences between the groups.

    Figure 1
    Figure 1

    Difference in proportion of women feeling ‘worse’ or ‘much worse’ (compared with the ‘same’ or ‘better’) than usual on individual items of the CSQ between women who reported testing HPV+, HPV unknown and HPV−. Error bars indicate 95% CIs of the difference in proportion (relative to women who reported testing HPV−). CSQ, Cervical Screening Questionnaire; HPV, human papillomavirus.

    Women who reported testing HPV+ were more likely to have increased worry of getting cervical cancer and greater concern regarding test results compared with women who reported testing HPV− and HPV unknown (p<0.001). Women who reported testing HPV− demonstrated greater reassurance from their test results than women who reported testing HPV+ (MD=1.08, 95% CI 0.61 to 1.56, p<0.001) or HPV unknown (MD=0.83, 95% CI 0.47 to 1.18, p<0.001).

    Perceived risk

    Women who reported testing HPV+ perceived their lifetime risk of getting cervical cancer to be significantly higher than women who reported testing HPV- (MD=0.41, 95% CI 0.23 to 0.60, p<0.001) or HPV unknown (MD=0.26, 95% CI 0.05 to 0.48, p=0.015). Women who reported testing HPV+ also perceived their cervical cancer risk relative to a person of the same age and average risk to be higher than women reporting HPV− (MD=0.54, 95% CI 0.27 to 0.80, p<0.001) and HPV unknown (MD=0.37, 95% CI 0.05 to 0.68, p=0.019).

    Knowledge of HPV and HPV testing

    The mean HPV knowledge and HPV testing knowledge scores are shown in table 2. The majority (82.1%, n=824) of women had heard of HPV and 62.3% (n=625) had heard of HPV testing. The HPV+ group scored significantly higher on HPV knowledge than the HPV− (MD=2.63, 95% CI 1.14 to 4.12, p<0.001) and HPV unknown (MD=3.43, 95% CI 1.66 to 5.19, p<0.001). Women who reported testing HPV+ had significantly greater knowledge of HPV testing compared with women who reported testing HPV− (MD=1.14, 95% CI 0.68 to 1.62, p<0.001) and HPV unknown (MD=1.46, 95% CI 0.90 to 2.02, p<0.001). Almost 81% of the sample correctly identified that HPV can cause cervical cancer, but only 10% knew that HPV usually does not need any treatment and 19% knew that most sexually active people will get HPV at some point in their lives.

    Understanding results

    In relation to understanding of results, a high proportion, 29.2% (n=19/65) of women who reported testing HPV+, incorrectly interpreted their cervical screening test results to mean that they have or are likely to have cervical cancer, while another 24.6% (n=16/65) perceived their results to mean ‘they definitely do not have cervical cancer’, which may be correct if they had already been followed up by colposcopy examination (online supplementary table 1). Of the women who reported testing HPV−, 24.6% (n=200/812) correctly interpreted their results to mean they are ‘very unlikely to have cervical cancer’ and 44% (n=357/812) understood their result to mean they ‘definitely do not have cervical cancer’. Overall, the majority (83.2%) of HPV+ and HPV− women were fairly/very confident in understanding their results. More women who reported testing HPV− reported being fairly/very confident in understanding their results (84.6%), followed by women who reported testing HPV+ (66.2%) (χ2 (5)=47.67, p<0.001; online supplementary table 1).

    Supplemental material

    Intentions for future screening

    A greater proportion of women who reported testing HPV+ reported an intention to definitely screen when next invited (78.5%; n=51/65), followed by women who reported testing HPV− (72.4%; n=588/812) and HPV unknown (56.7% n=72/127; χ2 (4)=20.22, p=0.003; online supplementary table 1).

    Discussion

    This study is the first to examine psychosocial impact of primary HPV screening in one of the first high-income countries to implement this into routine cervical screening. The proportion of women who reported testing HPV+ (6.5%) in this study is consistent with a recent study in New South Wales (~200 000 women) showing HPV+ prevalence of 8.1%.20 Our findings show heightened anxiety and distress in women who reported testing HPV+, compared with women reporting HPV− or unknown HPV results. These levels of anxiety are even higher than found in people about to undergo surgery for cancer,21 and distress was higher than previous research with women diagnosed with abnormal cytology and HPV+,22 with a medium effect size and almost 10-point difference demonstrated for anxiety between women who reported testing HPV+ and HPV−. Cancer worry and concern regarding test results were greatest in women who reported testing HPV+. Finding that women who reported testing HPV+ had higher anxiety and distress is not unexpected given the known and expected higher anxiety for participants in screening who receive a positive result rather than the reassurance of a negative screening test.23 However, the high level of anxiety and distress recorded here is cause for concern. Misunderstandings were demonstrated in the participants’ knowledge of HPV and in the interpretation of screening results, with almost half of women who reported testing HPV− not correctly identifying that they should return in 5 years. This suggests that there is an important need for greater community education surrounding cervical screening and HPV and clearer conversations between women and their practitioners when attending screening.

    The anxiety levels demonstrated by women who reported testing HPV+ in this study were raised well above normal scores, similar to levels found in HPV+ women in Hong Kong with atypical squamous cells of undetermined significance24 but higher than levels found in previous studies examining anxiety in women with abnormal cytology results.16 Almost 30% of women in this study interpreted their result to mean they either had or were likely to have cervical cancer. General distress was also much higher in women who reported testing HPV+ in this study compared with a previous study examining distress in women with abnormal cytology and HPV+ results.24 Timing may be an issue in this study, because women who screened HPV+ in the previous year may have been attending further follow-up, including requiring colposcopy, biopsy and treatment, which could have directly impacted on their anxiety and distress over and above receipt of the initial screening result during the time of the survey. Waiting to undergo colposcopy has been shown previously to increase anxiety levels.25 Encouragingly, previous studies examining anxiety and distress in women with abnormal cytology have found that, in the longer term (6 months), these levels reduce.22 24

    As we used an adapted version of the PEAPS-Q and the CSQ, direct comparisons with previous studies are not possible. However, our findings showed women who reported testing HPV+ feel worse than usual about sexual relationships, suggesting knowledge of their HPV adversely impacts how women feel about their sexual health. This is supported by our findings that less than 20% of the sample correctly knew how ubiquitous HPV is and that it does not usually need treatment.

    These findings complement an English study investigating the psychosocial impact of HPV testing on women during piloting of primary HPV testing.26 Anxiety (53.03) and distress (3.94) levels for women who reported testing HPV+ in this study are much higher compared with the English study (women HPV+ with abnormal cytology anxiety 42.9; distress 3.3). However, the point difference in anxiety between women who reported testing HPV+ and HPV− for both studies are almost the same. All women involved in the English pilot received information about what primary HPV screening is, what the HPV test results could be and what they mean for future cervical screening,27 whereas women invited for cervical screening in Australia at present receive no standardised information. Information and any supporting programme materials provided to women occur in the context of an individualised clinical interaction with a cervical screening provider. Result letters in Australia also tell women whether they are at risk of a significant cervical abnormality, reported as low, intermediate and high risk, which is likely to impact how women feel about their test result. For the NCSP to remain successful in its target for elimination of cervical cancer, it is necessary that women’s confidence in the programme is not undermined by poor understanding and/or misconceptions about the renewed programme and HPV testing.

    The different methods of sampling in the England and Australia study may in part explain these differences, and the women in this study may have been more likely to complete the survey due to being anxious about their result or cervical cancer in general. It is likely that clinicians are still learning how best to communicate the meaning and consequences of a HPV+ screening result under the renewed programme. These findings can help us support them to do this more effectively to benefit women attending cervical screening.

    Despite 87.4% of women being able to recall their HPV test result, only 82% reported having heard of HPV and 62% having heard of HPV testing. This may be explained by women not engaging with information that the test now examines the cervix for HPV, as the test is widely referred to by practitioners and information materials as the ‘cervical screening test’ and not HPV testing. Women who reported testing HPV+ also showed greater knowledge of both HPV and HPV testing, suggesting they may have searched for further information about HPV independently or through their doctor after their diagnosis. Overall, 80% of women knew about the link between HPV and cervical cancer, but there was still little understanding that most sexually active people will get HPV at some point in their lives, despite the widespread delivery of education about HPV at the time of the introduction of the National HPV Vaccination Programme. There is therefore still room to educate women through further initiatives to improve awareness and knowledge of HPV.

    The number of women who reported not knowing or remembering their result was almost 13%, which is concerning. It is possible that these women had forgotten or missed their result. All practices should ensure they have routine procedures in place to inform women of their results even if they are normal, as anxiety and distress levels in this group were high. Although the ARTISTIC trial previously found no difference in psychological outcomes between women who had been told or not told their HPV results (but received their cytology result),28 these women were fully informed that they would not receive their HPV results and had the option to find out if they wished.

    Some limitations of this study include its cross-sectional and retrospective nature, so we are not able to draw firm conclusions on causality of anxiety and distress. However, the consistency in our findings with the recent study in England and with previous literature gives us confidence that testing HPV+ is linked to poorer psychological outcomes. Women in this study demonstrated elevated anxiety levels, regardless of HPV status, which suggests that anxious women may have been more likely to take part in the survey, which has implications for the generalisability of the findings. Our sample is less diverse than the general population in education levels, but comparable on employment status. We did not obtain medical data for the women in this sample and therefore cannot verify their recollection of their cervical screening test result; however, previous studies have shown that women are highly accurate about reporting their cancer screening history29 and what women remember to be their result is more likely to be indicative of any psychosocial impact.

    Conclusions

    Women who reported testing HPV+ since the renewal of the NCSP in Australia reported significantly higher anxiety, general distress, concern and distress about test results than those women who reported testing HPV− and further work is needed to understand why. As clinicians become more familiar with the renewed programme, they may feel more comfortable counselling women about their HPV+ result, which may reassure women about their result. It is important, particularly in the early years of the renewal, that all women receive standardised high-quality information to accompany their test results, as this could help alleviate some of the distress and concern these women are experiencing.

    Key messages

    • Significant psychosocial impact is evident in women who reported testing human papillomavirus positive (HPV+) since the introduction of primary HPV screening in Australia.

    • Women who reported testing HPV+ demonstrated clinical levels of anxiety and were significantly more anxious than women who reported testing HPV−.

    • We need to understand whether ensuring all women receive high-quality standardised information with their results could minimise this psychosocial impact.

    Acknowledgments

    We thank Dynata for recruitment services, Alana Fisher for her input and support with data collection, and all study participants.

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    Supplementary materials

    • Supplementary Data

      This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

    • Supplementary Data

      This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

    Footnotes

    • Handling editor Catherine H Mercer

    • Twitter @ErinCvejic

    • Correction notice The article has been corrected since it was published online first. The affiliation of Julia Brotherton has been updated.

    • Contributors RHD and KJM conceived, designed and developed the methods for the study. RHD coordinated the running of the study. RHD, OM and EC contributed to the analysis. RHD drafted the manuscript. JMLB contributed to the content and critical analysis. All authors contributed to the interpretation of the analysis and critically revised the manuscript.

    • Funding This work was supported by a NHMRC Program Grant (APP1113532).

    • Competing interests JMLB’s employer VCS Foundation has received donated human papillomavirus (HPV) tests kits and equipment for unrestricted research purposes from HPV test manufacturers including Roche, Cepheid, Seegene and Becton Dickinson.

    • Patient consent for publication Not required.

    • Ethics approval This study was approved by The University of Sydney Human Ethics Committee (2018/836).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available on reasonable request.