Why Intellectual Disability matters this Breast Cancer Awareness Month

In recognition of Breast Cancer Awareness Month, we spotlight the critical need for enhanced breast cancer awareness and screening among women with intellectual disabilities in Ireland. With disparities in awareness and mortality rates, new initiatives aim to bridge the gap and empower this group.

October is Breast Cancer Awareness Month. It's a time to learn about breast health and how to lower your chances of getting breast cancer.

Each year in Ireland, more than 3,400 women and approximately 30 men are diagnosed with breast cancer and about 1 in 7 women will receive a diagnosis of breast cancer during their lifetime. Fortunately, there's a good chance of recovery if the breast cancer is found when it is in its early stages, which is why breast awareness is so important. Evidence suggests, however, that levels of breast awareness can differ substantially according to a range of different factors, including:

• Age: Most women are unaware that breast cancer risk increases with age
• Ethnicity: Black and Asian women diagnosed with breast cancer have poorer relative survival rates than white women (UK data)
• Socioeconomic status: Irish data has shown that the relative risk of being diagnosed with late-stage breast cancer is significantly higher in patients from the most compared with the least deprived quintiles
• Rural/urban: Breast cancers in women from urban populations are significantly more likely to have presented through screening than in rural women.

One other area that warrants much greater attention is that of breast awareness in those with intellectual disability. Evidence suggests that there are lower levels of participation in breast screening programmes and increased overall and breast cancer–specific mortality among women with intellectual disability, compared with women without intellectual disability. Several reasons have been proposed for this, including a lack of understanding about breast cancer awareness, caregiver attitudes and knowledge, literacy skills and availability of health information.

In Ireland, a 2023 report from the Irish National Ability Supports System (NASS) suggested that there are approximately 8,300 women availing of HSE funded disability services, a figure which is likely under-representative, as many women with mild intellectual disability will not be in receipt of such services. Given the incidence of breast cancer in the general population, it is estimated that approximately 1,185 of these women will receive a diagnosis of breast cancer during their lifetime. Unfortunately, despite this risk, research with Irish women with intellectual disability, published in 2018, noted that while most women knew that a lump was a warning sign for breast cancer, most did not know about the risk factors for breast cancer, nor did they know much about the breast screening programme. 

Fortunately, efforts are now underway to address these disparities in Ireland. A multidisciplinary project team at UCC and Cork University Hospital has been developing the ‘Look, Feel, Tell’ breast awareness programme, specifically tailored for women with intellectual disability. While still at an early stage, it is hoped that this intervention, which has been co-created with the active participation of women with intellectual disability, will provide women with mild/moderate levels of intellectual disability with the information, skills and support to empower them in making healthier lifestyle choices, becoming breast aware and taking proactive control of their own health and well-being.

For more information:

Stewarts Care partnered with Breast Cancer Ireland in 2023 to develop an easy read handbook aimed at educating individuals with intellectual disability about breast health and supporting them to recognise signs of breast cancer. The handbook can be accessed here https://www.stewartscare.ie/news/breast-cancer-awareness/

The HSE’s BreastCheck Screening Programme provides an easy-to-read information leaflet about breast screening. https://www.breastcheck.ie/_fileupload/accessibility/new-access-feb-24/bc-com-089-rev1-resource-1-easy-to-read-leaflet-about-breast-screening.pdf