Psychosocial impact of testing human papillomavirus positive in Australia's human papillomavirus‐based cervical screening program: A cross‐sectional survey

Abstract Objective To examine the impact of self‐reported human papillomavirus (HPV) test result (HPV negative, HPV positive, HPV result unknown) on a range of psychosocial outcomes. Methods Women and other people with a cervix in Australia aged 25–74 years who reported having participated in cervical screening since December 2017 were recruited through Facebook and Instagram to complete an online survey. The primary outcome measures were anxiety, emotional distress, and general distress. Results Nine hundred fifteen participants completed the online survey; 73.2% reported testing HPV negative (‘HPV−’), 15% reported testing HPV positive (‘HPV+’) and 11.8% reported that they did not know/remember their test result (‘HPV unknown’). Compared to participants testing HPV−, participants testing HPV+ had higher mean anxiety (41.67 vs. 37.08, p < 0.001) and emotional distress scores (11.88 vs. 7.71, p < 0.001). Concern about test result (34.3% vs. 1.3%, p < 0.001), perceived risk compared to average women (55.4% vs. 14.1%, p < 0.001), and cancer worry (27.8% vs. 5.9%, p < 0.001) were also greater among HPV+ participants than participants testing HPV−. Participants testing HPV+ felt less reassured about their screening result than participants testing HPV− (16% vs. 75.1%, p < 0.001). Participants testing HPV+ had greater knowledge of HPV (11.96 vs. 10.36 out of 16, p < 0.001) and HPV testing (3.94 vs 3.28 out of 5, p < 0.001) than participants who reported testing HPV−. Conclusions Elevated levels of anxiety and emotional distress were found in those testing HPV+ compared with those testing HPV−. Future research should examine what strategies should be used to deliver test results and what additional information is provided, in order to alleviate anxiety among individuals testing HPV+.


| INTRODUCTION
Cervical cancer is the fourth most commonly diagnosed cancer worldwide, 1 but in Australia cervical cancer prevalence is at an alltime low. 2 This is largely due to high uptake of cervical screening and widespread uptake of the human papillomavirus (HPV) vaccine. 3 The HPV-based screening program, introduced in December 2017, is thought to be more effective at reducing incidence and mortality due to cervical cancer than the previous program using cervical cytology (Pap) testing. 4 HPV testing has higher sensitivity for the detection of pre-cancerous lesions, facilitating longer screening intervals. 4 Given that HPV is transmitted sexually, prior research has shown shame and stigma to be associated with the disclosure of positive results to partner, family and friends; judgment from others; and the belief that negative connotations (such as sexual promiscuity) are associated with HPV. 5 We conducted a survey in 2017 to measure anxiety and distress levels shortly following the implementation of HPV-based screening, and found participants (women and other people with a cervix) who received HPV+ results, had significantly higher levels of anxiety and distress. 6 These effects are similar to responses observed in the broader sexually transmitted infection (STI) literature. 7 Fears of malignancy, partner infidelity, potential transmission, pain caused by colposcopy and treatment, and of future infertility have commonly been reported post communication of a HPV+ result. 5 These psychosocial stressors may have become more widespread now that HPV testing is a routine part of cervical screening, as around 8% of women and other people with a cervix test HPV+ in Australia's program. 2 Although only a small proportion of these individuals may experience anxiety or distress due to a HPV+ result, given the large numbers who attend for cervical screening each year, this would still equate to a large number of individuals experiencing a heightened emotional response. 2 Given the potential proportion of individuals testing HPV+ since implementation of the renewed cervical screening program, this study aimed to examine the psychosocial impact of primary HPV screening among Australians a further year into the renewal of the cervical screening program, in a sample recruited via social media.

| Sample
Eligible participants were individuals residing in Australia aged  who had undergone cervical screening since 1 December 2017 under the renewed National Cervical Screening Program (NCSP). Participants were excluded if they had no capacity to consent, had a previous diagnosis of cervical cancer or had undergone a hysterectomy.

| Procedure
Participants were recruited using targeted paid advertising on Facebook and Instagram between 13 and 23 March 2020, to 'complete a short survey about cervical screening'. Participants could enter a prize draw to win one of twenty $AUD20 vouchers. A weblink directed participants to read the participant information statement, provide consent to participate (via a tick-box), and complete a 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. 8,9 Primary outcomes were anxiety, measured using the State-Trait Anxiety Inventory (STAI-6), 10 13 cancer worry, understanding of HPV results, 14 perceived risk of developing cervical cancer, 15 concern regarding screening results, 16 15 Perceived risk compared to another woman with similar characteristics was assessed using 'What is your lifetime chance of getting cervical cancer compared to a woman of your age and race without any known risk factors?' (much below/ slightly below average/same average risk recoded as 'average/ below average'; slightly above/much above average recoded as 'above average'). 19

| Cancer worry
Worry about developing cervical cancer was assessed using 'How worried are you of getting cervical cancer in your lifetime?' (not at all/ a bit worried recoded as 'lower worry'; quite/very worried recoded as 'higher worry'). 15

| Concern about test results
Concern about test results was assessed using 'How concerned do you feel about your recent cervical screening result?' (not at all/ slightly/somewhat concerned recoded as 'lower concern'; moderately/very concerned recoded as 'higher concern'). 16

| Reassurance about test results
Reassurance about test results was assessed using 'How reassured do you feel about your recent cervical screening result?' (not at all/ slightly reassured recoded as 'lower reassurance'; somewhat/ moderately/very reassured recoded as 'higher reassurance'). 16

| Knowledge of HPV and HPV testing
Knowledge of HPV was assessed using 'Before today had you ever heard of human papillomavirus (HPV)?' (yes/no). Those responding 'yes' answered statements assessing knowledge of HPV (16 statements) and HPV testing (5 statements) as 'true', 'false' or 'don't know'). 18 All 'don't know' responses were recoded as 'incorrect' and a total knowledge score was calculated for knowledge of HPV (range 0-16) and HPV testing (range 0-5).

| Sample size
With a minimum sample of 1000 participants, and assuming approximately 7.5% of the sample is HPV+ and equal standard deviations of 14.6 on the STAI in both HPV+ and HPV− groups (based on previous work), 6 a 95% confidence interval no wider than �3.44 units (0.24 standard deviations) around the mean would be achievable.

| Analysis
Analyses were carried out using SPSS v22. Differences in the demographic characteristics between the three result groups (HPV+, HPV−, HPV unknown) were described descriptively. Variation in anxiety, general distress, emotional distress, knowledge of HPV and HPV testing across the three result groups were explored using ANCOVA. In the anxiety, general distress and emotional distress analyses, we adjusted for age, education, country of birth, relationship status, and cervical screening pre-December 2017. In the knowledge of HPV and HPV testing analyses, we additionally adjusted for HPV vaccine receipt. After establishing main effects, post-hoc tests using a Bonferroni adjustment were used to explore differences between groups.
Multivariate logistic regression models explored whether perceived risk of cervical cancer, cancer worry, and concern and reassurance about test results were associated with HPV test result outcome (adjusting for age, education, country of birth, relationship status and cervical screening pre-December 2017). Odds ratios, indicating increased or decreased odds for the outcome for each group compared to the HPV− group, with 95% confidence intervals and p values, were calculated.
Data collection was stopped prior to the minimum sample being achieved due to the start of the COVID pandemic, to minimize general anxiety and distress measures being confounded by the pandemic.

| RESULTS
Of the 100,712 impressions (number of advertisement views; views may not be unique each time), 2302 clicked through to the survey.

| General anxiety and distress
Mean scores for general anxiety, general distress, and emotional distress by HPV status are presented in Table 2

| Concern and reassurance about test results
Compared to participants who reported testing HPV−, participants who reported testing HPV+ had increased odds of reporting high concern about their test results (34.3% vs.  Year of last cervical screen Education split into high (university degree, diploma or certificate), medium (trade apprenticeship or higher school certificate) and low (school certificate or less or no school/other qualification). Population data for education from 2016 census (high: postgraduate diploma, graduate diploma, bachelor degree, advanced diploma, certificate 3 and 4, medium: year 10 and above, certificate 1 and 2, and low: year 9 or below and no educational attainment).

| DISCUSSION
This study found higher levels of anxiety and emotional distress in those testing HPV+ compared with those testing HPV− in the context of the Australian cervical screening program in a highly educated sample. Individuals who reported testing HPV+ were significantly more anxious than those who reported testing HPV−, on both the general anxiety measure (STAI) and the screening specific measure of emotional distress (CSQ). Elevated anxiety for participants who reported testing HPV+ relative to those reporting testing HPV− is consistent with earlier research immediately following the screening changes in 2017, 6 which showed a difference in mean anxiety using the STAI tool of around 10 points between participants who reported testing HPV+ and participants who reported testing HPV−. Such elevated anxiety levels were thought to be disproportionate to risk; similar levels had been reported in individuals who reported testing HPV+ with abnormal cytology 20 or individuals about to have a colposcopy. 21 Indeed, the results of this study, which collected its data just over 2 years following the renewal of the cervical screening program, showed that the difference in mean anxiety between people who reported testing HPV+ and people who reported testing HPV− is around five points.
Although the levels of anxiety are lower among participants who reported testing HPV+ in this sample compared with a previous study, 6 this study suggests that HPV testing may continue to Women responding 'slightly above average' or 'much above average' to the item 'What is your lifetime chance of getting cervical cancer compared to a woman of your age and race without any known risk factors?'.  26,27 In contrast to anxiety measures, distress specific to cervical screening was higher relative to previous studies. 6

| Clinical implications
This study highlights elevated anxiety and emotional distress in individuals testing HPV+, two years following the renewal of the NCSP.
Understanding what information individuals receive both prior to and following their cervical screening test is pertinent to ensure information needs are addressed in ways which may also minimise psychosocial impact.

| Conclusions
Individuals who reported testing HPV+ 2 years following implementation of the renewed NCSP in Australia still reported significantly higher anxiety, concern, and specific distress about test results than those individuals who reported testing HPV−. Future research evaluating the provision of information about HPV, test results and next steps on anxiety and distress, would be valuable.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author, Rachael H. Dodd, upon reasonable request.