Background: Cancer is one of the leading causes of potentially avoidable deaths of people with intellectual disability [1]. Emerging evidence shows that people with intellectual disability are less likely to participate in cancer screening than those without intellectual disability, including breast screening [2]. For breast screening, research suggests that people with intellectual disability are less likely to have ever been screened, and less likely to adhere to ongoing breast screening guidelines than people without intellectual disability [3-9]. The available research also suggests that women with intellectual disability face various barriers to accessing breast screening, including individual, environmental, support network capacity, workforce capacity and service design factors [10-12].
To date, available research on the barriers and enablers of participation in breast screening for women with intellectual disability has been predominately exploratory in nature and comes from studies with small sample sizes. There is a need for further research that explores the factors associated with adherence to breast screening guidelines using larger sample sizes and comparing the experience between women with and without intellectual disability.
This study aimed to address this gap by comparing participation in the BreastScreen New South Wales (NSW) mammography screening program for women with and without intellectual disability, and the factors associated with their participation and repeat participation in the program.
Study design: A population-based retrospective cohort study of women with intellectual disability in NSW (n=5256) and a frequency-matched random sample of women without intellectual disability in NSW (n=25966). Exposures and outcomes identified using linked Commonwealth and NSW administrative datasets.
Statistical methods: Descriptive statistics, logistic regression and competing risk analysis.
Results: Women with intellectual disability were 41% less likely to have ever participated in BreastScreen NSW than women without intellectual disability (OR=0.59, 95% CI 0.55-0.64). They were also 28% less likely to be rescreened than women without intellectual disability (HR=0.72, 95% CI 0.66-0.79). A range of factors were associated with an increased likelihood of participation in the program including: those residing in areas of low socioeconomic disadvantage, having a MBS-subsidised health assessment, chronic disease management plan or mental health treatment plan, having a cervical screening test, and having an increasing frequency of general practice visits.
Conclusion: Action is required to improve mammographic screening participation rates for women with intellectual disability. The factors associated with participation in the BreastScreen NSW program provide insights into the strategies required to enhance the accessibility of the program for this important group.