Health Inequalities: Cervical cancer

Very little is known about the prevalence of cervical cancer in women with learning disabilities in the UK. Studies from other countries suggest that the prevalence of cervical cancer is lower in women with learning disabilities than other women 5 . For example, a study in Australia found an age standardised incidence ratio of 0.35 (95% CI 0.04, 1.27). Similarly, studies from other countries suggest that the prevalence of abnormalities on cytologic examination appears to be low among women with learning disabilities compared to other women . However whilst lower, the risk of cervical cancer is not negligible.


Introduction
There were 3,126 new cases of cervical cancer in the UK in 2015 and 854 deaths in 2016 1 . One in 135 women will be diagnosed with cervical cancer during their lifetime 1 .
Cervical cancer primarily affects young adult women 2 with incidence rates for cervical cancer in the UK being highest in females aged 25 to 29 (2013-2015) 1 . However, the epidemiology of cervical cancer will change due to the introduction of human papillomavirus (HPV) vaccination for girls in 2008 and the introduction of HPV testing as the primary screening test 3 .

Prevalence and risk factors
Very little is known about the prevalence of cervical cancer in women with learning disabilities in the UK. Studies from other countries suggest that the prevalence of cervical cancer is lower in women with learning disabilities than other women 4 5 6 . For example, a study in Australia found an age standardised incidence ratio of 0.35 (95% CI 0.04, 1.27) 4 . Similarly, studies from other countries suggest that the prevalence of abnormalities on cytologic examination appears to be low among women with learning disabilities compared to other women 7 8 . However whilst lower, the risk of cervical cancer is not negligible 9 .
Nearly all cases of cervical cancer can be attributable to HPV infection 10 . Whilst there are many types of HPV and many do not cause problems, a small proportion of infections with certain types of HPV can persist and progress to cancer 10 . Risk factors for HPV persistence and the development of cervical cancer include early first sexual intercourse, multiple sexual partners, tobacco use and immune suppression 10 . The World Health Organization (WHO) recommends HPV vaccination for girls aged 9-13 years before they become sexually active 10 . In the UK, immunisation against HPV has been routinely offered to all girls aged 12-13 years as part of the childhood immunisation programme since 2008 11 . There are no known studies that consider risk factors for cervical cancer specifically among women with learning disabilities.

Impact on people with learning disabilities
There is no known evidence regarding death rates from cervical cancer among women with learning disabilities. It is clear that women with learning disabilities are less likely to receive a cervical screening test 12 13 14 15 16 and more likely to be ceased from screening (not receive invitations for screening) than other women 12 . Data from the General Practice Extraction Service (GPES) for 2017/18 indicates that 31.2% of women aged 25 to 64 with learning disabilities had a cervical smear in the prior 5 years compared to 73.2% of women without learning disabilities 13 . Similarly, data from the Joint Health and Social Care Assessment Framework 2012/2013 indicates that cervical cancer screening was received by 27.6% of women with learning disabilities compared to 70% of the population as a whole 14 . In addition, girls with learning disabilities may be less likely to receive the HPV vaccine 11 17 .
The low uptake of cervical screening by women with learning disabilities does not appear to be primarily due to these women being excluded from invitation for screening 9 . Women with learning disabilities have been found to be significantly less likely to respond to invitations for screening than other women (OR 0.13 (95% CI 0.098 -0.181) 12 . Other barriers to the uptake of cervical screening by women with learning disabilities include practical issues such as not being registered with a GP or not receiving an invitation letter due to out of date contact details, lack of accessible information regarding cervical screening, fear and anxiety around having the test performed, concerns around the capacity of women with learning disabilities to consent to the test 18 19 , lack of understanding of the purpose of the test 20 , and patient refusal 12 .
The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) found that some women with learning disabilities were denied access to cervical screening on the basis of their assumed lack of sexual activity 21 . Whilst sexual inactivity has been reported as a reason given by GPs for not performing a smear test for women with learning disabilities 22 , it may not be possible to predict who has had sexual experience 23 . Most young people with mild/moderate learning disabilities in England have had sexual intercourse by age 19/20 and education and health services, and families, need to operate on the assumption that most young people with mild/moderate learning disabilities will have sex and are more likely to have had unsafe sex than their peers 24 .

Healthcare and treatment
Cervical cancer is one of the few malignancies that now can be largely prevented through vaccination and adequate screening 2 . The cervical screening programme aims to prevent the development of cancer by identifying and treating precancerous disease 3 . As noted above, women with learning disabilities are less likely to access cervical screening and girls with learning disabilities may be less likely to receive 3 HPV vaccination. There is some anecdotal evidence that screening liaison nurses for adults with learning disabilities can improve uptake of cervical screening 17 . Attendance at cervical screening may also be facilitated by prolonged preparation work undertaken by learning disability nurses, helpful clinical behaviours in the primary care context and effective joint working 25 . There are no known studies regarding the treatment of cervical cancer in women with learning disabilities.

Social determinants
Cervical cancer in England is more common in females living in the most deprived areas 1 and studies suggest that lower socioeconomic groups have a lower uptake of cervical screening 26 27 . However, there does not appear to be any data specifically relating to women with learning disabilities. The quality of social care support received and access to appropriate healthcare is likely to impact on the prevention and early diagnosis of cervical cancer in women with learning disabilities but there does not appear to be any research that has specifically addressed this issue.

Resources
Public Health England & NHS England (2019) Supporting women with learning disabilities to access cervical screening (includes link to 'An easy guide to cervical screening') Public Health England Reasonable adjustment for people with a learning disability (includes a link to 'The Smear Test Film', a health education film resource for women eligible for cervical screening who have mild and moderate learning disabilities)