Access to cancer screening by people with learning ...

Tizard Learning Disability Review Access to cancer screening by people with learning disabilities in England 2012/13: information from the Joint Health and Social Care Assessment Framework Gyles Glover Anna Christie Chris Hatton

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To cite this document: Gyles Glover Anna Christie Chris Hatton , (2014),"Access to cancer screening by people with learning disabilities in England 2012/13: information from the Joint Health and Social Care Assessment Framework", Tizard Learning Disability Review, Vol. 19 Iss 4 pp. 194 - 198 Permanent link to this document: http://dx.doi.org/10.1108/TLDR-07-2014-0024 Downloaded on: 18 October 2015, At: 11:44 (PT) References: this document contains references to 19 other documents. To copy this document: [email protected] The fulltext of this document has been downloaded 79 times since 2014*

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Access to cancer screening by people with learning disabilities in England 2012/13: information from the Joint Health and Social Care Assessment Framework Gyles Glover, Anna Christie and Chris Hatton

Dr Gyles Glover is a Consultant in Public Health, based at Public Health England, Cambridge, UK. Dr Anna Christie is a Health Information Analyst, based at Public Health England, Durham, UK. Chris Hatton is a Professor of Psychology, Health and Social Care, based at Centre for Disability Research, Lancaster University, Lancaster, UK.

Abstract Purpose – The purpose of this paper is to present information from the Joint Health and Social Care Self-Assessment Framework (JHSCSAF) on reported rates of cervical cancer, breast cancer and bowel cancer screening for eligible people with learning disabilities in England in 2012/2013 compared to screening rates for the general population. Design/methodology/approach – Between 94 and 101 Learning Disability Partnership Boards, as part of the JHSCSAF, provided information to allow the calculation of rates of cervical cancer, breast cancer and bowel cancer screening in their locality, for eligible people with learning disabilities and for the population as a whole. Findings – At a national level, reported cancer screening coverage for eligible people with learning disabilities was substantially lower than for the population as a whole (cervical cancer screening 27.6 per cent of people with learning disabilities vs 70 per cent of total population; breast cancer screening 36.8 per cent of people with learning disabilities vs 57.8 per cent of total population; bowel cancer screening 28.1 per cent of people with learning disabilities vs 40.5 per cent of the general population). There were considerable geographical variations in reported coverage for all three screening programmes. Originality/value – Consistent with previous research, localities in England report cancer screening rates for eligible people with learning disabilities considerably below those of the general population. There is an urgent need to address data availability and quality issues, as well as reasonable adjustments to cancer screening programmes to ensure uniformly high rates of cancer screening for people with learning disabilities across England. Keywords Intellectual disability, Health, Prevention, Learning disabilities, Screening, Cancer Paper type Research paper

Introduction The proportion of people with intellectual disabilities who die from cancer and the prevalence of cancer are currently lower among adults with learning disabilities than in the general population (Glover and Ayub, 2010; Heslop et al., 2013), although people with learning disabilities have proportionally higher rates of gastrointestinal cancer (Cooke, 1997; Department of Health, 2011; Duff et al., 2001; Jancar, 1990). The incidence of cancer amongst people with learning disabilities is also likely to be increasing and the distribution of cancers changing due, in part, to increased longevity (Bonell, 2010; Cooke, 1997; Duff et al., 2001; Jancar, 1990). There is increasing and consistent evidence that people with learning disabilities are less likely to access a range of cancer screening services, including: ’

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cervical smear tests (Department of Health, 2011; Glover et al., 2012; Osborn et al., 2012; Pearson et al., 1998; Reynolds et al., 2008);

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DOI 10.1108/TLDR-07-2014-0024

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breast self-examinations and mammography (Davies and Duff, 2001; Department of Health, 2011; Djuretic et al., 1999; Glover et al., 2012; Osborn et al., 2012; Piachaud and Rohde, 1998; Truesdale-Kennedy et al., 2011; Willis et al., 2008); and

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bowel and prostate cancer screening (Department of Health, 2011; Osborn et al., 2012).


A recent analysis of a primary care database with over 450 General Practices in the UK (Osborn et al., 2012) reported the following Incidence Risk Ratios (IRRs) for people with learning disabilities compared to people without learning disabilities in England. In this context, the IRR reports the odds of people with learning disabilities getting screening compared to the general population; IRR ¼ 1 would mean that people with and without learning disabilities have an equal chance of getting screening; IRR ¼ 2 would mean that people with learning disabilities are twice as likely to get screening as people without learning disabilities; and IRR ¼ 0.5 would mean that people with learning disabilities are half as likely to get screening as people without learning disabilities. IRRs were: cervical smears IRR ¼ 0.54 (95 per cent CI 0.52-0.56); mammograms IRR ¼ 0.76 (0.72-0.81); screening for prostate cancer IRR ¼ 0.87 (0.80-0.96); and screening for bowel cancer IRR ¼ 0.86 (0.78-0.94). Screening rates for people with and without learning disabilities increased for all types of cancer from 1999 to 2009. Disparities between people with and without learning disabilities appeared to be reducing over time for prostate cancer screening, but maintaining or widening for cervical screening, mammograms and bowel cancer screening. This paper reports information from the Joint Health and Social Care Self-Assessment Framework (JHSCSAF) on screening for cervical, breast and bowel cancer amongst people with learning disabilities in England in 2012/2013.

Method For the JHSCSAF, each Learning Disability Partnership Board (typically one per local authority area) was asked to provide information on a range of education, health and social care issues concerning people with learning disabilities in England in 2012/2013 (see Glover and Christie, 2014, for details). As part of the JHSCSAF, Partnership Boards were asked to report the numbers of people eligible for cervical, breast and bowel cancer screening programmes in the whole population locally and how many of these had learning disabilities. They were also asked how many of those eligible had had a screening test done within the appropriate period. Overall, 66 per cent of Partnership Boards were able to report comparative coverage of cervical cancer screening, 63 per cent of Boards reported data on breast cancer screening and 59 per cent of Boards reported data on bowel cancer screening. The North West and North East regions were most consistently able to report these data (more than 80 per cent of Partnership Boards), and the East of England were least likely (one out of 11, or 9 per cent, of Partnership Boards).

Results To try and show as clearly as possible the extent of similarities or differences between Partnership Boards the information is presented in a “range chart” format. Information is presented for people with learning disabilities in each former Government Office region, for people with learning disabilities in England as a whole and for the whole population in England as a whole. The numbers in brackets after the name for each former Government Office region show the number of Partnership Boards in the region and the number for which usable data were available and that are therefore included in the chart. All bars note the percentage of eligible people who are reported as having accessed the relevant cancer screening programme. The pale grey bar shows the complete range of responses for the region or for England as a whole. The darker grey bar shows the range for the middle half of included values, the inter-quartile range. The vertical line shows the median value. Figures 1-3 show the coverage of cervical cancer, breast cancer and bowel cancer screening in people with learning disabilities reported as being achieved by Partnership Boards in each region and nationally. The bottom bar in each figure shows, for comparison, the range reported for people in the whole eligible population.

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Figure 1 Range of reported coverage of cervical cancer screening for people with learning disabilities – regional and England figures; England figures for all eligible people for comparison

North East (12/12) North West (23/25) Yorkshire Humber (9/15) East Midlands (8/9) West Midlands (6/14) East of England (1/11) London (21/33) South East (12/19) South West (8/16) England LD (100/154) England All (100/154) 0%

10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Coverage of cervical screening programme

Figure 2 Range of reported coverage of breast cancer screening for people with learning disabilities – regional and England figures; England figures for all eligible people for comparison


10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Coverage of breast screening programme

Figure 3 Range of reported coverage of bowel (colorectal) screening for people with learning disabilities – regional and England figures; England figures for all eligible people for comparison


10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Coverage of colorectal screening programme

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Figure 1 shows the results for cervical cancer screening. The median of the reported proportions of women with learning disabilities being screened for cervical cancer was 26.9 per cent, with high reported proportions in the South West (31.9 per cent) and low reported proportions in the East of England (22.1 per cent) and Yorkshire and the Humber (23.0 per cent). For comparison, cervical cancer screening in eligible women in the total population had a reported median coverage rate of 70.0 per cent. Figure 2 shows the results for breast cancer screening. The median of the reported proportions of women with learning disabilities being screened for breast cancer was 37.6 per cent, with high reported proportions in the East of England (56.4 per cent) and the North East (49.1 per cent) and low reported proportions in London (30.4 per cent). For comparison, breast cancer screening in eligible women in the total population had a reported median coverage of 62.5 per cent.


Figure 3 shows the results for bowel (colorectal) cancer screening. The median of the reported proportions of people with learning disabilities being screened for colorectal cancer was 25.8 per cent, with high reported proportions in the East of England (48.8 per cent) and the East Midlands (43.1 per cent) and low reported proportions in the West Midlands (23.4 per cent). For comparison, bowel cancer screening in eligible people in the total population had a reported median coverage of 39.4 per cent. At a national level, in all cases, reported cancer screening coverage for people with learning disabilities was substantially lower than for the eligible general population. However, there were substantial differences between the programmes. The general population coverage of eligible people was greatest for cervical cancer screening (70.0 per cent). This programme was the one that showed the biggest difference between general coverage and coverage for people with learning disabilities (27.6 per cent). Breast cancer screening achieved the best coverage for people with learning disabilities (36.8 per cent) and a smaller differential, in part because general population coverage was lower (57.8 per cent). Bowel cancer screening reported the lowest coverage in both groups (40.5 per cent in the general population and 28.1 per cent in people with learning disabilities).

Discussion Consistent with previous research (Department of Health, 2011; Osborn et al., 2012), information from localities provided as part of the JHSCSAF reported considerably lower rates of screening for cervical cancer, breast cancer and bowel cancer amongst people with learning disabilities in England compared to the total eligible population. As in Osborn et al. (2012), the national discrepancy in coverage was greatest for cervical cancer, with smaller though still substantial discrepancies for breast cancer and bowel cancer screening. However, it is important to note that smaller differences in cancer screening rates between people with learning disabilities and the general population may partly be a function of poorer coverage in the general population rather than improved coverage amongst people with learning disabilities. There was also wide geographical variation in cancer screening coverage for people with learning disabilities between regions and between Partnership Board areas within regions. Reported cervical cancer screening rates varied from virtually 0 per cent to almost 70 per cent, breast cancer screening rates varied from 0 per cent to over 80 per cent and bowel cancer screening rates varied from 0 to 100 per cent. Some of this geographical variation may reflect differences in data quality between localities (localities need to know both the number of people with learning disabilities accessing the cancer screening service and the number of eligible people with learning disabilities in the locality). Of even greater concern is that 34 per cent of Partnership Boards did not provide usable data on cancer screening for people with learning disabilities. In other information for the JHSCSAF, Partnership Boards vary widely in the extent to which they report such data are or are not available (Christie et al., 2014). Of course, reported geographical variation is also likely to reflect actual differences in cancer screening coverage across England. Examples of reasonable adjustments to cancer screening and intervention programmes for people with learning disabilities are increasing although still patchy. It is vital that processes to improve data quality and effective reasonable adjustments to all aspects of the cancer screening process are implemented nationally, to raise the performance

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of all localities to what is clearly being achieved in the best performing areas (see Turner et al., 2012, for resources and guidance).

References Bonell, S. (2010), “Neoplasms”, in O’Hara, J., McCarthy, J.E. and Bouras, N. (Eds), Intellectual Disability and Ill Health: A Review of the Evidence, Cambridge University Press, Cambridge, pp. 127-36. Christie, A., Baines, S., Hatton, C., Glover, G. and Turner, S. (2014), Joint Health and Social Care Self-Assessment Framework 2013. Detailed Report and Thematic Analysis, Public Health England, London. Cooke, L.B. (1997), “Cancer and learning disability”, Journal of Intellectual Disability Research, Vol. 41 No. 4, pp. 312-6. Davies, N. and Duff, M. (2001), “Breast cancer screening for older women with intellectual disability living in community group homes”, Journal of Intellectual Disability Research, Vol. 45 No. 3, pp. 253-7. Department of Health (2011), Victorian Population Health Survey of People with an Intellectual Disability 2009, State Government of Victoria, Melbourne. Djuretic, T., Laing-Morton, T., Guy, M. and Gill, M. (1999), “Concerted effort is needed to ensure these women use preventive services”, British Medical Journal, Vol. 318, p. 536.


Duff, M., Hoghton, M., Scheepers, M., Cooper, M. and Baddeley, P. (2001), “Helicobacter pylori: has the killer escaped from the institution? A possible cause of increased stomach cancer in a population with intellectual disability”, Journal of Intellectual Disability Research, Vol. 45 No. 3, pp. 219-25. Glover, G. and Ayub, M. (2010), How People with Learning Disabilities Die, Improving Health & Lives: Learning Disabilities Observatory, Durham. Glover, G. and Christie, A. (2014), Joint Health and Social Care Assessment Framework 2013: Detailed Report on Number Questions, Public Health England, Cambridge. Glover, G., Emerson, E. and Eccles, R. (2012), Using Local Data to Monitor the Health Needs of People with Learning Disabilities, Improving Health & Lives: Learning Disabilities Public Health Observatory, Durham. Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. (2013), Confidential Inquiry into Premature Deaths of People with Learning Disabilities, Norah Fry Research Centre, Bristol. Jancar, J. (1990), “Cancer and mental handicap: a further study”, British Journal of Psychiatry, Vol. 156, pp. 531-3. Osborn, D.P.J., Horsfall, L., Hassiotis, A., Petersen, I., Walters, K. and Nazareth, I. (2012), “Access to cancer screening in people with learning disabilities in the UK: cohort study in the health improvement network, a primary care research database”, PLoS ONE, Vol. 7, doi:10.1371/journal.pone.0043841. Pearson, V., Davis, C., Ruoff, C. and Dyer, J. (1998), “Only one quarter of women with learning disability in Exeter have cervical screening”, British Medical Journal, Vol. 316, p. 1979, doi:10.1186/1471-2458-8-30. Piachaud, J. and Rohde, J. (1998), “Screening for breast cancer is necessary in patients with learning disability”, British Medical Journal, Vol. 316, p. 1979-80. Reynolds, F., Stanistreet, D. and Elton, P. (2008), “Women with learning disabilities and access to cervical screening: retrospective cohort study using case control methods”, BMC Public Health, Vol. 8, p. 30. Truesdale-Kennedy, M., Taggart, L. and McIlfatrick, S. (2011), “Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography”, Journal of Advanced Nursing, Vol. 67 No. 6, pp. 1294-304. Turner, S., Emerson, E. and Glover, G. and the Cornwall Cancer Screening Team (2012), Making Reasonable Adjustments to Cancer Screening, Improving Health & Lives: Learning Disabilities Observatory, Durham. Willis, D.S., Kennedy, C.M. and Kilbride, L. (2008), “Breast cancer screening in women with learning disabilities: current knowledge and considerations”, British Journal of Learning Disabilities, Vol. 36 No. 3, pp. 171-84.

Corresponding author Professor Chris Hatton can be contacted at: [email protected] To purchase reprints of this article please e-mail: [email protected] Or visit our web site for further details: www.emeraldinsight.com/reprints

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