Submissions List TBI Interagency Conference

Cervical and breast cancer screening of women with intellectual disabilities: Evidence of inadequate receipt and marked racial disparities from medical records

  • Parish, Susan
  • Son, Esther
  • Swaine, Jamie
  • Luken, Karen


Health of women with intellectual disabilities


We examined medical records to determine rates of receipt of Pap tests and mammograms for a group (n=199) of women with intellectual disabilities. We found low rates of receipt of exams. White women were six times more likely to receive mammography than African American women.


Rates of receipt of cervical and breast cancer screening among women with intellectual disabilities are reported to be the worst for any population subgroup in the United States. However, the existing evidence of cervical and breast cancer screening rates is exclusively drawn from self-reported or caregiver-reported data. Objective evidence is needed to understand the prevalence of cervical and breast cancer screening among these women. After we obtained informed consent from the women (n= 199), we collected medical record data from the women’s health care providers.  Over five years, an average of 28% of women received a Pap test each year and 48% of women aged 40 or more received a mammogram. White women were nearly four times as likely to have received mammography than Black women.  These rates are troubling evidence that clinical guidelines are not being followed for this important preventive care for women with intellectual disabilities.