Breast cancer appears to be the most common type of cancer in women and the leading cause of mortality worldwide. Women with intellectual disability are not an exception. Research indicates that the incidence of cancer among women with intellectual disability is comparable to that of the general population. However women with intellectual disability may not be aware of the importance of breast cancer screening and examination, although it is known that the lifestyle many of these women lead predisposes them to breast cancer. Furthermore the fact that women with intellectual disability are not perceived as sexual beings reduces their possibility to access medical services related to sexual health. Accurate data on the prevalence or incidence of breast cancer in women with intellectual disability is limited and poorly documented. Yet there is clear evidence of the occurrence of breast cancer in these women. Nonetheless preventative medicine seems to come second for women with intellectual disability due to the primary medical problems associated with their disability.
Risk factors and breast cancer in women with intellectual disability
Growing evidence suggests that women with intellectual disability are more likely to experience a greater number of risk factors associated with breast cancer, thus placing them at an advanced threat of developing breast cancer compared to women without disability. These risk factors include: leading a sedentary lifestyle, having low levels of physical exercise and consuming a high fat diet, all of which can contribute to obesity which is considered a significant risk factor for breast cancer. In addition women with intellectual disability are reported to be more likely to develop breast cancer as a result of sexual inactivity. Other risk factors found more specifically in women with intellectual disability are nulliparity (not giving birth), which can result in a fourfold increase in risk of developing breast cancer. The fact that cancer is more common in women over 50, and the fact that women with intellectual disability are living longer lives accentuates the likelihood for them to develop this type of cancer. Loss of menstruation with low oestrogen levels and a shorter menstrual life are also reported to increase the incidence of breast cancer.
Hereditary cancer syndrome is also known to be the cause of approximately 5 to 10% of breast cancers. Women with at least one first degree relative with breast cancer have two to four times the risk of developing breast cancer. Therefore the surveillance recommendations for women at increased risk because of family cancer history, commences at the age of 30 or 10 years before the age of the earliest case in the family. Furthermore many syndromes causing intellectual disability such as Downs syndrome, Cowden syndrome, Fragile X, Pader-Willi and Angelman syndrome have been reported to augment the occurrence of breast cancer.
Yet lower uptake of screening among women with intellectual disability, especially those living in residential and institutional care, is reported. Thus, in order to improve both the quality of care and their quality of life, it is crucial for women with intellectual disability to become aware of the risks of breast cancer, and for parents and service providers to encourage them to undertake breast examinations.
Women with intellectual disability and screening for breast cancer
Screening is a health issue and it is essential that even people with intellectual disability have access and follow screening principles and practise of the general population. Breast cancer screening is important as it is associated with reduced risk of breast cancer mortality. Breast cancer screening is used to detect early cancers at a stage when treatment is likely to be effective. Yet the rate of screening by women with intellectual disability is lower than that for the general female population. Women with intellectual disability are in fact more likely to be diagnosed at a more advanced stage of the disease, as symptoms or conditions are often wrongly attributed to the women's primary disability. Furthermore women with severe intellectual disability have much less opportunity of being screened when compared to women with mild intellectual disability. While women with additional mobility impairments are reported to have significantly lower odds of receiving breast screening, representing an important shortfall in quality care. Moreover the belief that women with intellectual disability would not understand the procedure and would be anxious or afraid also inhibits carers and practitioners from proposing screening.
The possibility of low literacy levels and difficulty with communication in women with intellectual disability inhibit breast cancer screening awareness and regular attendance to screening. Consequently women with intellectual disability are less likely to be exposed to or understand the implications of media-led breast cancer awareness campaigns. These circumstances hamper women from early diagnoses of serious illnesses which would only be detected when they become visually evident, such as when a breast mass is formed.
It may also be the case that women with intellectual disability are dependent on others to identify relevant risk factors or signs and symptoms. Family and carers might not perceive screening as a priority, or else might not want to expose their loved ones to these situations. Therefore it is also necessary that families, carers and those working with women with intellectual disability receive education on the topic.
Malta has ratified the United Nations Convention for the Rights of Persons with Disability in 2012. Article 25 of the convention refers to Health. It identifies that State Parties shall "provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including the area of sexual and reproductive health and population-based public health programmes". The Article also specifies that State Parties need to "provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate".
Malta is thus required to provide a structure that allows women with intellectual disability to access breast cancer awareness and education campaigns, together with the possibility of adequate breast cancer screening.
Dr Claire Azzopardi Lane is a disability activist and researcher in the field of disability and a lecturer at the University of Malta.