Key learning points:
– The effect on women of an abnormal smear result
– Colposcopy assessment, management and follow up
– Tailoring healthcare information and support to individual need
The UK NHS Cervical screening Programme (NHSCSP) has dramatically reduced the incidence of, and death from, cervical cancer. In the UK the age-standardised incidence rate almost halved (from 16 per 100,000 women in 1986-1988 to 8.5 per 100,000 women in 2006 – 2008).1
Getting an abnormal cervical screening result often causes fear and confusion regardless of the grade (high or low) of abnormality.2 A referral to colposcopy (closer examination or the cervix) with an abnormal smear result may lead many women to think that they have some underlying disease. Also cervical examinations involve an intimate part of their bodies. It is therefore understandable that a colposcopy referral can cause many women high levels of anxiety and psychological distress.3 Although many will not develop symptomatic anxiety most women will worry about cancer.4
The introduction of human papilloma virus (HPV) testing into the NHSCSP in England is also likely to increase anxiety5 HPV is the main risk factor for abnormal changes and is found in most cases of cervical cancer.
The majority of women referred for colposcopy have low grade results and are at low risk of developing cancer. For many the anxiety may be out of proportion to the reality.
The information nurses at Cancer Research UK answer on average 10,000 annual enquiries from the public in relation to all aspects of cancer – 478 (5%) of the telephone and email enquiries are related to cervical cancer. Many of these enquiries are from women who do not have cervical cancer but are concerned about their cervical screening results, warning signs and symptoms and risk factors. There were 113 such enquiries (43 email, 70 phone calls) in a four month period in 2013.
Examples of the types of enquiries we receive:
“I have been in a stable relationship for the past 8 years. My recent cervical smear was mild dyskaryosis and HPV positive. How could I have got this? I have been referred for colposcopy. What does this mean?’ I am not able to think about anything else.”
“I have just had the result of my smear test it came back with abnormal changes, how likely is it that I have cancer?”
It may be poorly understood by the public that cervical screening is done to check and detect abnormal changes in the cells of the cervix (the neck of the womb) rather than to detect cancer. Screening is done so these abnormal changes can be detected, and monitored or treated at an early stage before they develop into cancer in the future.
For women who have abnormal smear tests healthcare professionals need to respond to psychosocial and information needs by providing accurate information and, just as importantly perspective.6
Psychosocial impact of screening
Women receive information on cervical screening prior to having a cervical smear including information on the limitations of screening (risk of false positive and negative results) and HPV. As part of the process of informed consent the smear taker also has responsibility for giving this information, including information on what and abnormal result means. However, getting an abnormal smear and positive HPV result in reality is often more traumatic for women than may have been imagined before getting the result.7 HPV information in particular is more likely to address medical requirements rather than women’s psychosocial needs.8
A large review of studies identified how daunting women found a diagnosis of HPV, they were worried about it being a sexually transmitted infection (STI), possible effect of this on their relationships and the resulting social stigma. As women often had poor prior knowledge about STI’s and cervical cancer they found it difficult to put their HPV result into perspective.7
As women with HPV are likely to be younger they may also worry about treatment and fertility. They are also more likely to be in full time employment and have children making it harder for them to attend hospital appointments.2 Women from ethnic minorities may also suffer more anxiety.4 This may be related to factors such as cultural, religious beliefs or have difficulty understanding information if English is not a first language. Lifestyle issues such as higher number of sexual partners and in particular smoking may also increase anxiety. Smokers may regard themselves are being at higher risk of cancer generally.2
The ongoing roll out of HPV testing since 2011 is a new experience for women in the NHSCSP in England.7 It may be some time before the full impact on women can be assessed. A total of 167,394 referrals to colposcopy were reported in 2012-13, an increase of 13.2% from 2011-12 (147,889 referrals). The large increase in referrals is likely to be partly due to the roll-out of HPV testing. 76% of these referrals were due to an abnormal smear. A little over three and a half million smears were tested.9
HPV testing will ‘triage’ women with low grade changes on cervical smear and those with a positive HPV result will be referred for a colposcopy examination. Those who are negative will go back to normal recall (routine three-yearly smear). More than half (52%) of the referrals for colposcopy in 2012-2013 had borderline changes or mild dyskaryosis on smear. These changes are often referred to as low grade. Dyskaryosis is the name given to small changes that are found in the cells of the cervix. Moderate and severe dyskaryosis are referred to as high grade, and these accounted for 9% and 13% of referrals to colposcopy. Women with high grade changes are likely to have HPV and all are referred directly to colposcopy.
Previously women with low grade changes would have been referred for a colposcopy examination if smears at six monthly intervals over 12-18 months continued to be positive. HPV testing is being considered by the cervical screening programmes in Northern Ireland, Scotland and Wales. It is possible that they will adopt HPV triage in the future.
The majority of abnormal changes in the cells of the cervix are caused by HPV. Most sexually active people will come into contact with HPV at sometime in their life, it is very common. Most will clear the infection within one to three years. HPV infection and cervical cell abnormalities are more common in younger women (under 25). These women are more likely to clear the infection and have cervical cell abnormalities that return to normal. To avoid unnecessary testing and treatment in this age group cervical screening in England starts at age 25.1
The areas of changed cells on the cervix are known as cervical intraepithelial neoplasia (CIN). This is diagnosed on cervical biopsy – CIN 1 is commonly associated with low grade smear results and CIN 2 and 3 with high grade.9 There are 30 subtypes of HPV known to affect the cells of cervix and these can be high or low risk for persistent infection. Persistence is more likely for high risk HPV types and these are more likely to cause high grade cervical cell changes.10
HPV persistence is known to be necessary to cause CIN 3 (carcinoma in situ), and for the development of invasive cervical cancer. In a comprehensive update on the natural history of HPV related cancers it is estimated from studies that most women (90%) with evidence of CIN 1 will clear HPV infection. This is higher than that for CIN3 (20-30%). Not all women with CIN 3 will go on to develop an invasive cancer.10
The test used in the NHS identifies high risk HPV in the cervix only. It is not possible to tell from the test how long HPV has been present. It is possible for HPV to remain latent (not active) for long periods even decades.10
The subtypes of HPV infection that can cause visible warts in the genital area, vagina and cervix are low risk for CIN and are not associated with progression to cancer.
Progression from HPV infections to CIN is shorter (one to five years) than progression to cancer (10 years or longer). Less is known about CIN progression to invasive cancer and it is likely that some other factor(s) is involved.10 Cervical cancer develops very slowly and this is the main reason for the success of screening. However, a small number of women may progress to invasive cancer more quickly.
Women who clear a particular HPV type are unlikely to become reinfected by the same type: however it does not mean that they are immune to other subtypes. Women can be infected by more than one type of HPV.10
There is some evidence that some lifestyle and socioeconomic factors may be risk factors or co factors in persistence of HPV and the development of cancer. These include smoking, age at first intercourse, number of life-time partners, oral contraceptive use, multiparity, co-infection with herpes simplex virus-2 or chlamydia trachomatis Human immunodeficiency virus (HIV) increases the risk of HPV persistent strongly suggesting that immunosuppression plays a role.11
Colposcopy assessment, management and follow up
Colposcopy examination is done to have a closer look at the cervix and detect the area of abnormality on the cervix that is causing the abnormal smear. CIN is not visible to the naked eye. Most women will be seen in colposcopy within eight weeks of referral.9
If on examination an area of abnormality is seen on the cervix a diagnostic biopsy is usually taken. In most cases colposcopy examination in women with low grade smears is normal or confirms CIN 1. In a small number of cases a higher grade of abnormality is found and an excisional biopsy is recommended to remove the area of abnormality. In 2012-2013 2.6% of women referred to colposcopy with low grade abnormalities had an excisional treatment. Colposcopy treatment with an excisional biopsy is often referred to as a large loop excision of the transformation zone (LLETZ).9
Women with normal colposcopy and no evidence of CIN are discharged to normal recall (regular three yearly smears). Those who had evidence of CIN (with or without biopsy) are recommended to have a repeat smear in 12 months. Depending on local guidelines this may be with colposcopy or with the woman’s general practitioner (GP). If follow up smear is positive for HPV they will be referred again for colposcopy. Women who had a higher grade of abnormality and excisional treatment have a follow up smear and repeat HPV test (test of cure), and a colposcopy examination in six months.9
Information and healthcare interventions
Colposcopy referral has been shown to be associated with strong emotional reactions.3 HPV may increase this apprehension.6 While HPV testing may reduce anxiety in the long term due to less uncertainty, and less cervical smear tests and follow up appointments, it can increase anxiety in the short term.5
The effect of information on women’s experience of being referred for colposcopy shows that it may not improve anxiety.2,3,7 NHSCSP information leaflets are usually included with smear results and colposcopy appointment letters. Depending on local guidelines results letters may use different terminology. For example, the terms low grade abnormality, borderline changes or mild dyskaryosis may be used. Medical terminology may be frightening and confusing. There is less known about the information that women get from healthcare professions or find for themselves.2 The impact of information found on the internet is unknown.6,2 Cervical screening reporting systems vary worldwide and the differing terminology can lead to further fear and confusion.
In addition to written information direct interventions to identify and deal with concerns about an abnormal smear result may be needed.2,6 Direct interventions include face to face or telephone consultation with a healthcare professional.6 Women are likely to experience variations in the level of information and healthcare support they can access. If direct intervention was offered routinely it may have additional resource and training implications in primary care.
It is clear that no single intervention is likely to address the concerns of all women. Women may have underlying anxiety about other issues in their lives and may lack social support, and these issues may affect their response to an abnormal smear result. Accurate information and time to discuss their particular concerns are likely to lessen anxiety, and help them to put the fear of cancer into perspective.
The majority of women referred for colposcopy with low grade smears will clear HPV infection and their cervical smears will return to normal. Very few women will need treatment. However it is important that women with evidence of abnormal changes on the cells of the cervix on colposcopy are followed up until their smear returns to normal.
1. NHS Cervical Screening Programme How common is cervical cancer? at http://www.cancerscreening.nhs.uk/cervical/how-common-cervical-cancer.html
2. Gray N M Sharp L Cotton SC Masson LF Little J Walker LG Avis M Philips Z Russell I Whynes D Cruickshank M Woalley CM (2006) Psychological effects of a low grade abnormal cervical smear test result: anxiety and associated factors BrJ Cancer 94(9) 1253-1262 at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2361408/
3. Swancutt D R Greenfield SM Luesley DM Wilson S (2011) Women’s experience of colposcopy: a qualitative investigation BMC Womens Health 11 11http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088886/
4. Johnson CY Sharp L Cotton SC Harris CA Gray NM Little J and in collaboration with the TOMBOLA Group PLoS One 2011 6(6) e21046 at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2827716/
5. Mc Caffery KJ Irwig L Turner R Foong Chan S Macaskill P Lewicka M Clarke J Weisberg E Barratt (2010) A Psychosocial outcomes of three methods for the management of borderline abnormal cervical cervical smears: an open randomised trial BMJ 340 b4491 at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2827716/
6. Palacios J (2013) The impact of information materials on psychosocial responses to HPV diagnosis and management Journal of Student Nursing Research Vol 6 issue 1 at http://repository.upenn.edu/josnr/vol1/iss1/2/
7. Hendry M Pasterfield D Lewis R Clements A Damery S Neal RD Adke R Weller D Campbell C Patnick J Saseni P Hurt C Wilson S Wilkinson C (2012) Are women ready for the new cervical screening protocol in England? A systemic review and qualitative synthesis of views about human papillomavirus testing Br J Cancer 107(2) 243-254 at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3394982/
8. Hall B, Howard K, McCaffery K. (2008) Do cervical cancer screening patient information leaflets meet the HPV information needs of women. Patient Educ Couns. 72 (1):78-87. [PubMed]
9. Cervical Screening Programme England 2012-2013 The information Centre for Health and Social Care ISBN 978-1-84-636971-1 at http://www.hscic.gov.uk/article/2021/Website-Search?q=cervical+cancer+20…
10. Moscicki AB Schiffman M Burchell A Albero G Giuliano AR Goodman MT Kjaer SK Palefsky J (2012) Updating the Natural History of Human Papillomanirus and Anogenital Cancers Vaccine volume 30, supplement 5 at http://www.sciencedirect.com/science/journal/0264410X/30/supp/S5
11. Cancer Research UK Cervical cancer risk factors at http://www.cancerresearchuk.org/cancer-info/cancerstats/types/cervix/ris…
12. Cancer Research UK Treatment if you have abnormal smears at http://www.cancerresearchuk.org/cancer-help/type/cervical-cancer/smears/…