Article
Cancer screening in women with intellectual disabilities: An Irish perspective Mary Reidy Waterford Institute of Technology, Ireland
Suzanne Denieffe
Journal of Intellectual Disabilities 2014, Vol. 18(1) 51–60 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514521067 jid.sagepub.com
Waterford Institute of Technology, Ireland
Sine´ad Foran Waterford Institute of Technology, Ireland Date accepted: 20 December 2013
Abstract In the Republic of Ireland, more than 8000 women with intellectual disabilities (IDs), aged 20 years and over, are registered for service provision. Their health needs challenge preventative health services including breast and cervical cancer screening programmes. This review explores the literature about cancer screening participation rates and issues related to screening for Irish women with IDs. Low cancer screening participation rates are evident in Irish women with IDs; and the women shed light on the barriers they perceive related to the screening experience. These experiences are reflected in the international literature for women with IDs. Further research involving the assessment of the breast and cervical cancer awareness in Irish women with IDs and their participation in cancer screening programmes is recommended. Strategies are required to increase their participation in screening programmes that may lead to the earlier diagnosis with better outcomes. Keywords breast, cervical, cancer screening, women, intellectual disabilities
Introduction It is estimated that there are almost 60 million people worldwide with an intellectual disability (ID) (International Association for the Scientific Study of Intellectual Disabilities, 2002). ID is
Corresponding author: Mary Reidy, Department of Nursing, Waterford Institute of Technology, Cork Road, Waterford, Ireland. Email: [email protected]
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characterised by significant limitations in both intellectual functioning and adaptive behaviour as expressed in practical, social and conceptual skills, which originate before the age of 18 years (Schalock et al., 2010). The National Intellectual Disability Database reports that 27,324 people with IDs were registered for service provision in Ireland in 2011; 8050 of those registered are women over the age of 20 years (Kelly, 2012). In recent years, there have been significant improvements in the life expectancy of people with IDs, which are largely due to improved medical care, rehabilitation services and living conditions (International Association for the Scientific Study of Intellectual Disabilities, 2002; Patja et al., 2000; Sullivan et al., 2004a). The ageing of people with mild IDs is equivalent to that of the general population and the age standardised incidence of cancers in people with IDs is not significantly different to that of the general population (Patja et al., 2000, 2001; Sullivan et al., 2004a). This evolving demographic profile is expected to correlate with increases in cancer prevalence amongst people with IDs (Wilkinson and Cerreto, 2008). Cancer is a global term for a variety of diseases characterised by uncontrolled cellular growth, increased angiogenesis and/or decreased programmed cell death (Alberts and Hess, 2008). A key objective of cancer screening programmes is to reduce cancer mortality through early diagnosis and treatment (International Agency for Research on Cancer, 2013). BreastCheck, the Irish national cancer screening service, introduced in 2000, invites eligible women aged 50–64 years with no symptoms of breast cancer to have a free mammogram biennially. The programme has a database register of age-eligible women compiled from information sourced from the Department of Social Protection and General Medical Services in accordance with national legislation. It is the first national screening service provider worldwide to offer a fully digitised mammography service that exhibits a significant improvement in image quality, especially in dense breast tissue. The target uptake at screening is 70%; in 2011, the screening rate was 72.2%. Over 125,000 women participated in the screening programme and 832 women had cancers detected (National Cancer Screening Service, 2013). CervicalCheck was introduced in September 2008 and offers women between the age of 25 and 60 years the opportunity to have a free cervical smear test. The screening intervals are every 3 years for women aged 25–44 years and every 5 years for women aged 45–60 years. It is estimated that cervical cancer screening can prevent at least 75% of cervical cancers in women aged 60 years and over and at least 45% of cervical cancers in women in their 30s (Cancer Research UK, 2013). In the first 3 years of the programme, 60.9% of the eligible population were screened. Precancerous abnormalities were detected in just over 8000 women, and 104 women were diagnosed with cervical cancer (National Cancer Screening Service, 2012).
Aims The aims of this article are to explore the cancer screening participation rates in women with IDs in the Republic of Ireland; to examine the participation rates in women with IDs in other countries; and to consider the barriers faced by Irish women with IDs who attend screening and compare these experiences with those of women with IDs internationally.
Review strategy Electronic databases used in this article included PUBMED, Wiley Online Library, Science Direct, PsychInfo and Academic Search Complete. The keywords used were cervical cancer, breast
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cancer, screening, learning disabilities, IDs, developmental disabilities and women. The inclusion criteria included studies written in English related to breast and cervical screening in women with IDs. The literature review was restricted to the last 10 years (2003–2013). Initially, 40 articles were retrieved through the five databases; however, a large volume of these articles were duplicated across the databases. A total of six articles met the inclusion criteria and were explored in the review. These studies explored breast and cervical cancer screening in women with and without IDs nationally and internationally (see Table 1). In addition, Irish reports on breast and cervical cancer screening programmes’ statistics in the general population were reviewed.
Results During the course of the literature review, three key themes evolved regarding the context of the study aims. The first theme related to breast cancer and screening in Irish women with IDs, the second theme concerned breast and cervical screening participation rates in women with IDs in the international arena and finally the barriers faced by Irish women with IDs when attending screening compared to the international experience. Each theme will be discussed in the following sections.
Theme 1: Breast cancer and screening in Irish women with IDs The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) is a large-scale nationally representative study of Irish people with an ID aged 40 years and over. This study was conducted on 753 Irish people, representing almost 9% of the target population with IDs. Over half the participants were female with an average age of 54.7 years. The study has close harmonisation with TILDA and facilitates the comparison of similarities and differences experienced by the general population and people with IDs. In the IDS-TILDA study, Mc Carron et al. (2011) found that breast cancer incidence (29%) in Irish women with IDs is comparable to the incidence (30%) in Irish women without IDs. Lalor and Redmond (2009) undertook a survey to explore the extent of breast surveillance for breast cancer among post-menopausal women with IDs living in three residential care settings in Ireland. The findings indicate that 67% of the 90 respondents had successfully completed mammography. This remains lower than the 72.2% uptake for women reported by BreastCheck (National Cancer Screening Service, 2013). The comparison of this convenience sample of postmenopausal women with IDs with national norms relating to mammography uptake seems to indicate evidence of disparities in access to screening programmes. The highest successful completion of the mammogram was recorded in women with mild to moderate IDs; whilst in the severe to profound group, none of the women had successfully obtained a mammogram. As the BreastCheck database register is compiled from information supplied by the Department of Social Protection and General Medical Services, it would be expected that all age-eligible women would be registered. Evidence of disparities in access to screening services for women with IDs was apparent in this study as 14% of the age-eligible women surveyed were not included in the BreastCheck register. The authors of this article are unable to discuss the cervical cancer screening uptake of women with IDs in the Republic of Ireland, due to the paucity of literature available on this topic.
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Table 1. Breast and cervical cancer screening inequalities for women with IDs. Author/year/ geographical location Aim of study
Methods/sample
Key findings (breast and cervical cancer screening)
Evidence of health service inequalities in the following areas: inequality of access to health services; preventative and screening services, specific groups are particularly disadvantaged such as women with ID; financial barriers to accessing services; communication, attitudinal and physical barriers. To promote the quality of life Descriptive statistical analysis Evidence of less common gender-specific screening of the health interview and health of people with checks for breast cancer survey; n ¼ 1253 people ID in Europe; to test the and cervical cancer in with ID in 14 European validity and utility of the women with IDs. countries. POMONA health indicators for people with ID; to establish ways to sustain the flow of information about the health of people with ID nationally, at European level and internationally. Statistical and content analysis 67% of women had successfully To identify practices in completed mammogram; of a newly developed relation to breast 14% of eligible women had questionnaire; n ¼ 90: surveillance for postnot received an invitation to primary carers of postmenopausal women with attend; 16% were unable to menopausal women with ID; to identify challenges complete the procedure due ID; women with ID particithat affect mammography to difficulties such as fear, pated in questionnaire screening services attendistress and inability to completion based on ability. dance; to explore the cooperate; 24% of women practices related to clinical had no breast surveillance at breast examinations. all.
D’Eath et al. To explore the experience of Thematic analysis of interviews using Miles and Irish people with disabilities (2005), Huberman’s framework. in accessing mainstream Ireland n ¼ 32; 27 people with health services; to consider disabilities including ID this in the context of and 5 advocates and international findings and; parents. to present the findings to relevant parties to inform practice, policy or further research.
Noonan Walsh et al. (2008), Europe
Lalor and Redmond (2009), Ireland
(continued)
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Table 1 (continued) Author/year/ geographical location Aim of study
Methods/sample
Key findings (breast and cervical cancer screening)
To explore issues for people Descriptive statistical analysis Access to health checks was high overall; concerns of interviews; n ¼ 753 with an ID in areas such as regarding access to people with ID their ageing profile, health screening; lower screening representing 8.9% of the and health services needs; access for people with Irish ID population >40 to potentially compare the severe to profound ID; years. ageing of people with ID prevalence of cancer directly with the general diagnosis was slightly lower ageing population. amongst people with ID than for the general Irish adult population; breast cancer being the most commonly reported cancer in women with ID. Relative rates of screening Osborn et al. To explore whether rates of A cohort study using data were significantly lower for from THIN, research cancer screening differ in (2012), people with LD; disparities database compiled from people with learning United in cervical screening rates 450 general practices disability compared with Kingdom were 45% lower in 2008/9: across the UK. people without a learning IRR ¼ 0.76 (0.72–0.81) LD and women with no LD. disability in primary care. (95% CI); Disparities in Cervical screening cohort breast screening rates were (age-eligible women): 35% lower in 2008/9: IRR ¼ n ¼ 6254 (LD); n ¼ 33,425 0.54 (0.52–0.56) (95% CI). (no LD). Breast screening cohort (ageeligible women): n ¼ 2956 (LD); n ¼ 17,354 (no LD). The proportion of women A cohort study using data Cobigo et al. To estimate the rates of with ID who are not from the ICES that has cervical and breast cancer (2013), anonymised, linked healthscreening among eligible Ontario, screened for cervical related databases for health women with ID; to Canada cancer is nearly twice what services in Ontario. compare the rates of it is in the women without WID – women with ID cervical and breast cancer ID. WoID – women without ID screening between eligible The proportion of women n ¼ 17,777 (WID); n ¼ women with and without with ID who are not 1,352,366 (WoID) – 20% ID; to examine if any screened for breast cancer random sample of WoID. observed differences with mammography is 1.5 between women with and times what it is in the without ID persist after women without ID. factors such as age, socioeconomic status, rurality and health care utilisation are accounted for. Mc Carron et al. (2011), Ireland
ID: intellectual disability; THIN: The Health Improvement Network; ICES: Institute for Clinical Evaluative Sciences; IRR: Incident rates and rates ratios; LD: learning disability.
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Theme 2: Contemporary research from Europe, United Kingdom and Canada on breast and cervical screening participation rates for women with IDs Europe. POMONA II Health Indicators for People with Intellectual Disabilities: Using an Indicator Set (2005–2008) was a European Commission public health project. It aimed to develop and test a set of health indicators specific to people with IDs with the potential to increase the visibility of people with IDs in health information surveys in member states in the European Union. The data in this exploratory study represented a convenience sample to test an indicator set and may not be deemed representative of people with IDs nationally in the member states. However, the findings suggested evidence of disparities in gender-specific screening tests for European women with IDs; less than half the women with IDs in the sample reported having a mammogram and less than onethird of the women reported participating in cervical cancer screening in the 14 member states in the relevant time periods (Noonan Walsh et al., 2008). United Kingdom. In the United Kingdom (UK), Osborn et al. (2012) undertook a retrospective cohort study to assess whether people with IDs have poorer access to cancer screening using The Health Improvement Network (THIN) primary care research database. The active participants in THIN represented almost 6% of the UK population, at the time of the study. The two cohort groups of interest were people with ID and a demographically similar group without IDs. With regard to breast screening in the UK, women with IDs (n ¼ 2956) were compared with women without IDs (n ¼ 17,354) in the mammogram cohort, in 2009. The key finding in this cohort is that age-eligible women with IDs were still 35% less likely to have a mammogram than those without IDs. Women with IDs (n ¼ 6254) were compared with women without IDs (n ¼ 33,425) in the cervical cohort in the time period 2008–2009. The key finding in this cohort is that age-eligible women with IDs were 45% less likely to have cervical cancer screening than those without IDs. Canada. A recently published study undertaken by Cobigo et al. (2013) in Ontario, Canada, investigated whether cervical and breast cancer screening programmes were equitable for women with IDs. Two cohorts of adult women with and without IDs living in Ontario who were eligible for health coverage in a 12-month period in 2009–2010 were created. All women with IDs (n ¼ 16,663) and a random sample of 20% of the women without IDs (n ¼ 1,352,366) were included in the cohorts. The key findings in this study were that in Ontario the proportion of age-eligible women with IDs who did not receive a mammogram was one and a half times that of age-eligible women without IDs. The proportion of age-eligible women with IDs who were not screened for cervical cancer was almost twice that of age-eligible women without IDs.
Theme 3: Barriers faced by Irish women with IDs when attending screening compared with the international experience D’Eath et al. (2005) undertook interviews with people with a range of disabilities including IDs, with parents and with advocates in one health service area in Ireland (n ¼ 32, age range 21–77 years). Irish women with IDs who had accessed screening perceived a number of barriers, including a lack of awareness amongst the personnel carrying out the procedure about people with IDs and abandonment of the test when the person found it difficult to cooperate during the
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procedure. People with physical disabilities had further concerns about environmental barriers particularly those surrounding the positioning for a mammogram. Lalor and Redmond (2009) established that Irish women with more severe IDs have poorer access to breast cancer screening programmes, and these findings are reiterated in Mc Carron et al. (2011). Regrettably, women with IDs often present with later, less treatable stages of cancer and have poorer outcomes (Sullivan et al., 2004a). In the international literature, there is agreement concerning these perceived barriers to screening for Irish women with IDs. Concerns have been expressed about physical disabilities and stature (Biswas et al., 2005; Sullivan et al., 2004b; Wilkinson et al., 2011), medical personal interactions with women with IDs (Rees, 2011; Sullivan et al., 2004b; Wilkinson et al., 2011), painful experiences of procedure (Biswas et al., 2005; Sullivan et al., 2004b; Truesdale-Kennedy et al., 2011; Wilkinson et al., 2011), lack of understanding about the procedure resulting in stress and anxiety (Parish et al., 2012; Sullivan et al., 2004b; Truesdale-Kennedy et al., 2011; Wilkinson et al., 2011;), and poor provision of accessible information (Kennedy et al., 2011; Sullivan et al., 2004b; Truesdale-Wilkinson et al., 2011).
Discussion In the IDS-TILDA study, Mc Carron et al. (2011) found that breast cancer incidence in Irish women with IDs is comparable to the incidence in Irish women without IDs. These data clearly challenge the societal misconception uncovered by D’Eath et al. (2005) that Irish women with IDs do not get cancer or need cancer screening. Current Irish census data suggest a strong link between disability and poor health; of those reporting that they had bad or very bad health, 91.7% also reported having a disability including IDs. There is a marked increase in health disparities between disabled and non-disabled individuals in Ireland after the age of 25 years (Central Statistics Office, 2012). An Irish report on the impact of disability highlighted that a person with a disability present before the age of 25 years has an increased likelihood of having no qualification, a reduced chance of third-level education and a reliance on a social welfare payment as their source of income (Gannon and Nolan, 2005). Walsh et al. (2010) contend that socio-economic classification and education may offer insight into the individual’s ability to acquire and process health-related information. Literacy challenges present a formidable barrier to people with IDs to engage in and take ownership of their own health needs (Mc Carron et al., 2011). Walsh et al. conclude that differences in participation rates in the national cervical screening programme may persist in the short term, and uptake may depend on the women’s ability to organise a screening appointment (2010). Unfortunately, this may result in Irish women missing the vital opportunity for the early detection and treatment of cancer. This presents a challenge to health professionals and services providing preventative breast and cervical cancer screening (Bouchardy Magnin, 2004). Lalor and Redmond (2009) provided evidence that age-eligible women with IDs in the Republic of Ireland have lower participation rates than women in the general population in the breast cancer screening programme. This is similar to the international experience for women with IDs who participate in breast and cervical screening programmes (Cobigo et al., 2013; Noonan Walsh et al., 2008; Osborn et al., 2012). D’Eath et al. (2005) reported that Irish women with IDs who had accessed screening perceived a number of barriers including physical, environmental and attitudinal barriers that reflected the experience of women with IDs internationally.
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There is a distinct lack of clarity in the Republic of Ireland on the participation rates of women with IDs in breast and cervical cancer screening programmes. Walsh et al. (2010) did not provide any breakdown of the presence of an ID in their sample. BreastCheck and CervicalCheck do not separate screening uptake for women with IDs from women in the general population (National Cancer Screening Service Communication Department, 2013). Further research into the assessment of the cancer awareness of Irish women with IDs and their participation in breast and cervical cancer screening programmes is recommended. Strategies need to be developed and evaluated, which aim to increase participation in screening programmes by Irish women with IDs. This is intended to lead to earlier diagnosis of breast and cervical cancer with better outcomes.
Limitations The principal limitation of this review is the comparison of convenience samples of Irish women with IDs with national norms for cancer screening uptake rates. The authors acknowledge that drawing inferences from this type of comparison may not be empirically sound as the convenience samples may not be deemed representative of Irish women with IDs. However, given the limited evidence base available in an Irish context, these comparisons give valuable insight into the apparent inequalities in cancer screening uptake for Irish women with IDs.
Conclusion The health needs of Irish women with IDs present a challenge to preventative health services including cancer screening services (Bouchardy Magnin, 2004). International recommendations encompass the provision of tailored health promotion for the women with IDs and their carers to increase cancer awareness and improve participation rates in screening programmes (Cobigo et al., 2013; Mc Carron et al., 2011; Parish et al., 2012; Wilkinson et al., 2011). In this context, it is opportune to assess the breast and cervical cancer awareness and screening awareness amongst Irish women with IDs.
Recommendations It is timely to investigate the reasons for the differences in screening services uptake for these women when compared with the general population in Ireland. The implementation and evaluation of a tailored health education programme for Irish women with IDs may offer a potential solution to achieve earlier detection and reduce the unnecessary deaths of women with IDs from breast and cervical cancer. Funding This work was supported by the Health Service Executive, Ireland [Student Support Grant to M.R.].
References Alberts D and Hess L (2008) Introduction to cancer prevention. In: Alberts D and Hess L (eds) Fundementals of Cancer Prevention. 2nd ed. Berlin, Germany: Springer, pp.1–12. Biswas M, Whalley H, Foster J, et al. (2005) Women with learning disability and uptake of screening: audit of screening uptake before and after one to one counselling. Journal of Public Health 27: 344–347.
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Bouchardy Magnin C. (2004) Breast cancer screening among women with intellectual disability. Sozial und Praventivmedizin 49: 361–362. ¨ Cancer Research UK (2013) Cervical cancer screening. Available at: www.cancerresearchuk.org (2013, accessed 10 May 2013). Central Statistics Office (2012) This is Ireland: Highlights from Census 2011, Part 1. Dublin, Ireland: Stationery Office. Cobigo V, Ouellette-Kuntz H, Balogh R, et al. (2013) Are cervical and breast cancer screening programmes equitable? The case of women with intellectual and developmental disabilities. Journal of Intellectual Disability Research 57: 478–488. D’Eath M, Sixsmith J, Connor R, et al. (2005) The experience of people with disabilities accessing health services in Ireland: Do inequalities exist? Research Series 2. Dublin, Ireland: National Disability Authority. Gannon B and Nolan B (2005) Disability and Social Inclusion in Ireland. Dublin, Ireland: Economic and Social Research Institute. International Agency for Research on Cancer (2013) IARC screening group-rationale. Available at: http:// screening.iarc.fr/rationale.php (2013, accessed 16 May 2013). International Association for the Scientific Study of Intellectual Disabilities (2002) Aging and intellectual disabilities. Available at: www.iassid.org/pdf/aging-factsheet.pdf (2013, accessed 1 May 2013). Kelly C (2012) HRB Statistics Series 17: Annual Report of the National Intellectual Disability Database Committee 2011. Dublin, Ireland: Health Research Board. Lalor A and Redmond R (2009) Breast screening for post-menopausal women. Learning Disability Practice 12: 28–33. Mc Carron M, Swinburne J, Burke E, et al. (2011) Growing Older with an Intellectual Disability in Ireland 2011: First Results from The Intellectual Disability Supplement of the Irish Longitudinal Study on Ageing. Dublin, Ireland: School of Nursing and Midwifery, Trinity College. National Cancer Screening Service (2012) Cervical Check Programme Report 2010-2011. Dublin, Ireland: National Cancer Screening Service. National Cancer Screening Service (2013) Breast Check Programme Report 2011-2012. Dublin, Ireland: National Cancer Screening Service. National Cancer Screening Service Communication Department (2013) Screening uptake levels. Dublin, Ireland: National Cancer Screening Service. Noonan Walsh P, Hall L and Ryan D (2008) Health indicators for people with intellectual disability: using an indicator set. Pomona II Final Report. UCD Centre for Disability Studies, Dublin, Ireland: POMONA II 2005-2008 Partnership. Osborn DPJ, Horsfall L, Hassiotis A, et al. (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 7: e43841. Parish SL, Swaine JG, Luken K, et al. (2012) Cervical and breast cancer screening knowledge of women with developmental disabilities. Intellectual & Developmental Disabilities 50: 79–91. Patja K, Eero P and Iivanainen M (2001) Cancer incidence among people with intellectual disability. Journal of Intellectual Disability Research 45: 300–307. Patja K, Iivanainen M, Vesala H, et al. (2000) Life expectancy of people with intellectual disability: a 35-year follow-up study. Journal of Intellectual Disability Research 44(Pt 5): 591–599. Rees G (2011) Increasing access to cancer screening programmes. Learning Disability Practice 14: 14–19. Schalock RL, Borthwick-Duffy SA, Bradley VJ, et al. (2010) Intellectual Disability: Definition, Classification, and Systems of Supports. Washington, DC: American Association on Intellectual and Developmental Disabilities. Sullivan S, Hussain R, Threlfall T, et al. (2004a) The incidence of cancer in people with intellectual disabilities. Cancer Causes and Control 15: 1021–1025.
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Sullivan S, Slack-Smith L and Hussain R (2004b) Understanding the use of breast cancer screening services by women with intellectual disabilities. Sozial und Praventivmedizin 49: 398–405. ¨ 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 67: 1294–1304. Walsh B, Silles M and O’Neill C (2010) A cross-border comparison of breast and cervical cancer screening uptake. Irish Medical Journal 103: 297–300. Wilkinson JE and Cerreto MC (2008) Primary care for women with intellectual disabilities. Journal of the American Board of Family Medicine 21: 215–222. Wilkinson JE, Deis CE, Bowen DJ, et al. (2011) ‘It’s easier said than done’: perspectives on mammography from women with intellectual disabilities. Annals of Family Medicine 9: 142–147.
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Cancer screening in women with intellectual disabilities: An Irish perspective Mary Reidy Waterford Institute of Technology, Ireland
Suzanne Denieffe
Journal of Intellectual Disabilities 2014, Vol. 18(1) 51–60 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514521067 jid.sagepub.com
Waterford Institute of Technology, Ireland
Sine´ad Foran Waterford Institute of Technology, Ireland Date accepted: 20 December 2013
Abstract In the Republic of Ireland, more than 8000 women with intellectual disabilities (IDs), aged 20 years and over, are registered for service provision. Their health needs challenge preventative health services including breast and cervical cancer screening programmes. This review explores the literature about cancer screening participation rates and issues related to screening for Irish women with IDs. Low cancer screening participation rates are evident in Irish women with IDs; and the women shed light on the barriers they perceive related to the screening experience. These experiences are reflected in the international literature for women with IDs. Further research involving the assessment of the breast and cervical cancer awareness in Irish women with IDs and their participation in cancer screening programmes is recommended. Strategies are required to increase their participation in screening programmes that may lead to the earlier diagnosis with better outcomes. Keywords breast, cervical, cancer screening, women, intellectual disabilities
Introduction It is estimated that there are almost 60 million people worldwide with an intellectual disability (ID) (International Association for the Scientific Study of Intellectual Disabilities, 2002). ID is
Corresponding author: Mary Reidy, Department of Nursing, Waterford Institute of Technology, Cork Road, Waterford, Ireland. Email: [email protected]
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characterised by significant limitations in both intellectual functioning and adaptive behaviour as expressed in practical, social and conceptual skills, which originate before the age of 18 years (Schalock et al., 2010). The National Intellectual Disability Database reports that 27,324 people with IDs were registered for service provision in Ireland in 2011; 8050 of those registered are women over the age of 20 years (Kelly, 2012). In recent years, there have been significant improvements in the life expectancy of people with IDs, which are largely due to improved medical care, rehabilitation services and living conditions (International Association for the Scientific Study of Intellectual Disabilities, 2002; Patja et al., 2000; Sullivan et al., 2004a). The ageing of people with mild IDs is equivalent to that of the general population and the age standardised incidence of cancers in people with IDs is not significantly different to that of the general population (Patja et al., 2000, 2001; Sullivan et al., 2004a). This evolving demographic profile is expected to correlate with increases in cancer prevalence amongst people with IDs (Wilkinson and Cerreto, 2008). Cancer is a global term for a variety of diseases characterised by uncontrolled cellular growth, increased angiogenesis and/or decreased programmed cell death (Alberts and Hess, 2008). A key objective of cancer screening programmes is to reduce cancer mortality through early diagnosis and treatment (International Agency for Research on Cancer, 2013). BreastCheck, the Irish national cancer screening service, introduced in 2000, invites eligible women aged 50–64 years with no symptoms of breast cancer to have a free mammogram biennially. The programme has a database register of age-eligible women compiled from information sourced from the Department of Social Protection and General Medical Services in accordance with national legislation. It is the first national screening service provider worldwide to offer a fully digitised mammography service that exhibits a significant improvement in image quality, especially in dense breast tissue. The target uptake at screening is 70%; in 2011, the screening rate was 72.2%. Over 125,000 women participated in the screening programme and 832 women had cancers detected (National Cancer Screening Service, 2013). CervicalCheck was introduced in September 2008 and offers women between the age of 25 and 60 years the opportunity to have a free cervical smear test. The screening intervals are every 3 years for women aged 25–44 years and every 5 years for women aged 45–60 years. It is estimated that cervical cancer screening can prevent at least 75% of cervical cancers in women aged 60 years and over and at least 45% of cervical cancers in women in their 30s (Cancer Research UK, 2013). In the first 3 years of the programme, 60.9% of the eligible population were screened. Precancerous abnormalities were detected in just over 8000 women, and 104 women were diagnosed with cervical cancer (National Cancer Screening Service, 2012).
Aims The aims of this article are to explore the cancer screening participation rates in women with IDs in the Republic of Ireland; to examine the participation rates in women with IDs in other countries; and to consider the barriers faced by Irish women with IDs who attend screening and compare these experiences with those of women with IDs internationally.
Review strategy Electronic databases used in this article included PUBMED, Wiley Online Library, Science Direct, PsychInfo and Academic Search Complete. The keywords used were cervical cancer, breast
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cancer, screening, learning disabilities, IDs, developmental disabilities and women. The inclusion criteria included studies written in English related to breast and cervical screening in women with IDs. The literature review was restricted to the last 10 years (2003–2013). Initially, 40 articles were retrieved through the five databases; however, a large volume of these articles were duplicated across the databases. A total of six articles met the inclusion criteria and were explored in the review. These studies explored breast and cervical cancer screening in women with and without IDs nationally and internationally (see Table 1). In addition, Irish reports on breast and cervical cancer screening programmes’ statistics in the general population were reviewed.
Results During the course of the literature review, three key themes evolved regarding the context of the study aims. The first theme related to breast cancer and screening in Irish women with IDs, the second theme concerned breast and cervical screening participation rates in women with IDs in the international arena and finally the barriers faced by Irish women with IDs when attending screening compared to the international experience. Each theme will be discussed in the following sections.
Theme 1: Breast cancer and screening in Irish women with IDs The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) is a large-scale nationally representative study of Irish people with an ID aged 40 years and over. This study was conducted on 753 Irish people, representing almost 9% of the target population with IDs. Over half the participants were female with an average age of 54.7 years. The study has close harmonisation with TILDA and facilitates the comparison of similarities and differences experienced by the general population and people with IDs. In the IDS-TILDA study, Mc Carron et al. (2011) found that breast cancer incidence (29%) in Irish women with IDs is comparable to the incidence (30%) in Irish women without IDs. Lalor and Redmond (2009) undertook a survey to explore the extent of breast surveillance for breast cancer among post-menopausal women with IDs living in three residential care settings in Ireland. The findings indicate that 67% of the 90 respondents had successfully completed mammography. This remains lower than the 72.2% uptake for women reported by BreastCheck (National Cancer Screening Service, 2013). The comparison of this convenience sample of postmenopausal women with IDs with national norms relating to mammography uptake seems to indicate evidence of disparities in access to screening programmes. The highest successful completion of the mammogram was recorded in women with mild to moderate IDs; whilst in the severe to profound group, none of the women had successfully obtained a mammogram. As the BreastCheck database register is compiled from information supplied by the Department of Social Protection and General Medical Services, it would be expected that all age-eligible women would be registered. Evidence of disparities in access to screening services for women with IDs was apparent in this study as 14% of the age-eligible women surveyed were not included in the BreastCheck register. The authors of this article are unable to discuss the cervical cancer screening uptake of women with IDs in the Republic of Ireland, due to the paucity of literature available on this topic.
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Table 1. Breast and cervical cancer screening inequalities for women with IDs. Author/year/ geographical location Aim of study
Methods/sample
Key findings (breast and cervical cancer screening)
Evidence of health service inequalities in the following areas: inequality of access to health services; preventative and screening services, specific groups are particularly disadvantaged such as women with ID; financial barriers to accessing services; communication, attitudinal and physical barriers. To promote the quality of life Descriptive statistical analysis Evidence of less common gender-specific screening of the health interview and health of people with checks for breast cancer survey; n ¼ 1253 people ID in Europe; to test the and cervical cancer in with ID in 14 European validity and utility of the women with IDs. countries. POMONA health indicators for people with ID; to establish ways to sustain the flow of information about the health of people with ID nationally, at European level and internationally. Statistical and content analysis 67% of women had successfully To identify practices in completed mammogram; of a newly developed relation to breast 14% of eligible women had questionnaire; n ¼ 90: surveillance for postnot received an invitation to primary carers of postmenopausal women with attend; 16% were unable to menopausal women with ID; to identify challenges complete the procedure due ID; women with ID particithat affect mammography to difficulties such as fear, pated in questionnaire screening services attendistress and inability to completion based on ability. dance; to explore the cooperate; 24% of women practices related to clinical had no breast surveillance at breast examinations. all.
D’Eath et al. To explore the experience of Thematic analysis of interviews using Miles and Irish people with disabilities (2005), Huberman’s framework. in accessing mainstream Ireland n ¼ 32; 27 people with health services; to consider disabilities including ID this in the context of and 5 advocates and international findings and; parents. to present the findings to relevant parties to inform practice, policy or further research.
Noonan Walsh et al. (2008), Europe
Lalor and Redmond (2009), Ireland
(continued)
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Table 1 (continued) Author/year/ geographical location Aim of study
Methods/sample
Key findings (breast and cervical cancer screening)
To explore issues for people Descriptive statistical analysis Access to health checks was high overall; concerns of interviews; n ¼ 753 with an ID in areas such as regarding access to people with ID their ageing profile, health screening; lower screening representing 8.9% of the and health services needs; access for people with Irish ID population >40 to potentially compare the severe to profound ID; years. ageing of people with ID prevalence of cancer directly with the general diagnosis was slightly lower ageing population. amongst people with ID than for the general Irish adult population; breast cancer being the most commonly reported cancer in women with ID. Relative rates of screening Osborn et al. To explore whether rates of A cohort study using data were significantly lower for from THIN, research cancer screening differ in (2012), people with LD; disparities database compiled from people with learning United in cervical screening rates 450 general practices disability compared with Kingdom were 45% lower in 2008/9: across the UK. people without a learning IRR ¼ 0.76 (0.72–0.81) LD and women with no LD. disability in primary care. (95% CI); Disparities in Cervical screening cohort breast screening rates were (age-eligible women): 35% lower in 2008/9: IRR ¼ n ¼ 6254 (LD); n ¼ 33,425 0.54 (0.52–0.56) (95% CI). (no LD). Breast screening cohort (ageeligible women): n ¼ 2956 (LD); n ¼ 17,354 (no LD). The proportion of women A cohort study using data Cobigo et al. To estimate the rates of with ID who are not from the ICES that has cervical and breast cancer (2013), anonymised, linked healthscreening among eligible Ontario, screened for cervical related databases for health women with ID; to Canada cancer is nearly twice what services in Ontario. compare the rates of it is in the women without WID – women with ID cervical and breast cancer ID. WoID – women without ID screening between eligible The proportion of women n ¼ 17,777 (WID); n ¼ women with and without with ID who are not 1,352,366 (WoID) – 20% ID; to examine if any screened for breast cancer random sample of WoID. observed differences with mammography is 1.5 between women with and times what it is in the without ID persist after women without ID. factors such as age, socioeconomic status, rurality and health care utilisation are accounted for. Mc Carron et al. (2011), Ireland
ID: intellectual disability; THIN: The Health Improvement Network; ICES: Institute for Clinical Evaluative Sciences; IRR: Incident rates and rates ratios; LD: learning disability.
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Theme 2: Contemporary research from Europe, United Kingdom and Canada on breast and cervical screening participation rates for women with IDs Europe. POMONA II Health Indicators for People with Intellectual Disabilities: Using an Indicator Set (2005–2008) was a European Commission public health project. It aimed to develop and test a set of health indicators specific to people with IDs with the potential to increase the visibility of people with IDs in health information surveys in member states in the European Union. The data in this exploratory study represented a convenience sample to test an indicator set and may not be deemed representative of people with IDs nationally in the member states. However, the findings suggested evidence of disparities in gender-specific screening tests for European women with IDs; less than half the women with IDs in the sample reported having a mammogram and less than onethird of the women reported participating in cervical cancer screening in the 14 member states in the relevant time periods (Noonan Walsh et al., 2008). United Kingdom. In the United Kingdom (UK), Osborn et al. (2012) undertook a retrospective cohort study to assess whether people with IDs have poorer access to cancer screening using The Health Improvement Network (THIN) primary care research database. The active participants in THIN represented almost 6% of the UK population, at the time of the study. The two cohort groups of interest were people with ID and a demographically similar group without IDs. With regard to breast screening in the UK, women with IDs (n ¼ 2956) were compared with women without IDs (n ¼ 17,354) in the mammogram cohort, in 2009. The key finding in this cohort is that age-eligible women with IDs were still 35% less likely to have a mammogram than those without IDs. Women with IDs (n ¼ 6254) were compared with women without IDs (n ¼ 33,425) in the cervical cohort in the time period 2008–2009. The key finding in this cohort is that age-eligible women with IDs were 45% less likely to have cervical cancer screening than those without IDs. Canada. A recently published study undertaken by Cobigo et al. (2013) in Ontario, Canada, investigated whether cervical and breast cancer screening programmes were equitable for women with IDs. Two cohorts of adult women with and without IDs living in Ontario who were eligible for health coverage in a 12-month period in 2009–2010 were created. All women with IDs (n ¼ 16,663) and a random sample of 20% of the women without IDs (n ¼ 1,352,366) were included in the cohorts. The key findings in this study were that in Ontario the proportion of age-eligible women with IDs who did not receive a mammogram was one and a half times that of age-eligible women without IDs. The proportion of age-eligible women with IDs who were not screened for cervical cancer was almost twice that of age-eligible women without IDs.
Theme 3: Barriers faced by Irish women with IDs when attending screening compared with the international experience D’Eath et al. (2005) undertook interviews with people with a range of disabilities including IDs, with parents and with advocates in one health service area in Ireland (n ¼ 32, age range 21–77 years). Irish women with IDs who had accessed screening perceived a number of barriers, including a lack of awareness amongst the personnel carrying out the procedure about people with IDs and abandonment of the test when the person found it difficult to cooperate during the
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procedure. People with physical disabilities had further concerns about environmental barriers particularly those surrounding the positioning for a mammogram. Lalor and Redmond (2009) established that Irish women with more severe IDs have poorer access to breast cancer screening programmes, and these findings are reiterated in Mc Carron et al. (2011). Regrettably, women with IDs often present with later, less treatable stages of cancer and have poorer outcomes (Sullivan et al., 2004a). In the international literature, there is agreement concerning these perceived barriers to screening for Irish women with IDs. Concerns have been expressed about physical disabilities and stature (Biswas et al., 2005; Sullivan et al., 2004b; Wilkinson et al., 2011), medical personal interactions with women with IDs (Rees, 2011; Sullivan et al., 2004b; Wilkinson et al., 2011), painful experiences of procedure (Biswas et al., 2005; Sullivan et al., 2004b; Truesdale-Kennedy et al., 2011; Wilkinson et al., 2011), lack of understanding about the procedure resulting in stress and anxiety (Parish et al., 2012; Sullivan et al., 2004b; Truesdale-Kennedy et al., 2011; Wilkinson et al., 2011;), and poor provision of accessible information (Kennedy et al., 2011; Sullivan et al., 2004b; Truesdale-Wilkinson et al., 2011).
Discussion In the IDS-TILDA study, Mc Carron et al. (2011) found that breast cancer incidence in Irish women with IDs is comparable to the incidence in Irish women without IDs. These data clearly challenge the societal misconception uncovered by D’Eath et al. (2005) that Irish women with IDs do not get cancer or need cancer screening. Current Irish census data suggest a strong link between disability and poor health; of those reporting that they had bad or very bad health, 91.7% also reported having a disability including IDs. There is a marked increase in health disparities between disabled and non-disabled individuals in Ireland after the age of 25 years (Central Statistics Office, 2012). An Irish report on the impact of disability highlighted that a person with a disability present before the age of 25 years has an increased likelihood of having no qualification, a reduced chance of third-level education and a reliance on a social welfare payment as their source of income (Gannon and Nolan, 2005). Walsh et al. (2010) contend that socio-economic classification and education may offer insight into the individual’s ability to acquire and process health-related information. Literacy challenges present a formidable barrier to people with IDs to engage in and take ownership of their own health needs (Mc Carron et al., 2011). Walsh et al. conclude that differences in participation rates in the national cervical screening programme may persist in the short term, and uptake may depend on the women’s ability to organise a screening appointment (2010). Unfortunately, this may result in Irish women missing the vital opportunity for the early detection and treatment of cancer. This presents a challenge to health professionals and services providing preventative breast and cervical cancer screening (Bouchardy Magnin, 2004). Lalor and Redmond (2009) provided evidence that age-eligible women with IDs in the Republic of Ireland have lower participation rates than women in the general population in the breast cancer screening programme. This is similar to the international experience for women with IDs who participate in breast and cervical screening programmes (Cobigo et al., 2013; Noonan Walsh et al., 2008; Osborn et al., 2012). D’Eath et al. (2005) reported that Irish women with IDs who had accessed screening perceived a number of barriers including physical, environmental and attitudinal barriers that reflected the experience of women with IDs internationally.
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There is a distinct lack of clarity in the Republic of Ireland on the participation rates of women with IDs in breast and cervical cancer screening programmes. Walsh et al. (2010) did not provide any breakdown of the presence of an ID in their sample. BreastCheck and CervicalCheck do not separate screening uptake for women with IDs from women in the general population (National Cancer Screening Service Communication Department, 2013). Further research into the assessment of the cancer awareness of Irish women with IDs and their participation in breast and cervical cancer screening programmes is recommended. Strategies need to be developed and evaluated, which aim to increase participation in screening programmes by Irish women with IDs. This is intended to lead to earlier diagnosis of breast and cervical cancer with better outcomes.
Limitations The principal limitation of this review is the comparison of convenience samples of Irish women with IDs with national norms for cancer screening uptake rates. The authors acknowledge that drawing inferences from this type of comparison may not be empirically sound as the convenience samples may not be deemed representative of Irish women with IDs. However, given the limited evidence base available in an Irish context, these comparisons give valuable insight into the apparent inequalities in cancer screening uptake for Irish women with IDs.
Conclusion The health needs of Irish women with IDs present a challenge to preventative health services including cancer screening services (Bouchardy Magnin, 2004). International recommendations encompass the provision of tailored health promotion for the women with IDs and their carers to increase cancer awareness and improve participation rates in screening programmes (Cobigo et al., 2013; Mc Carron et al., 2011; Parish et al., 2012; Wilkinson et al., 2011). In this context, it is opportune to assess the breast and cervical cancer awareness and screening awareness amongst Irish women with IDs.
Recommendations It is timely to investigate the reasons for the differences in screening services uptake for these women when compared with the general population in Ireland. The implementation and evaluation of a tailored health education programme for Irish women with IDs may offer a potential solution to achieve earlier detection and reduce the unnecessary deaths of women with IDs from breast and cervical cancer. Funding This work was supported by the Health Service Executive, Ireland [Student Support Grant to M.R.].
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