Preventative Reproductive Health Care

Breast cancer is a leading cause of death for women in the United States and worldwide. In 2005, an estimated 211,240 American women were diagnosed with invasive breast cancer. It was also estimated that 40,410 American women would die from the disease during the year. Risk factors for the development of breast cancer include family history of breast cancer, increased age (particularly over 50), nulliparity, Caucasian race, onset of menses before age 12, fibrocystic breast disease, oral contraceptive use, long-term hormone replacement therapy, alcohol consumption, and obesity. Women from minority and low-income groups experience a higher mortality rate from breast cancer. This statistic may be related to the decreased accessibility of early detection and treatment options for women in this segment of the population.

Early detection and treatment of breast tumors are critical to improving individual survival rates. Although routine annual checkups with a primary care provider and mammograms are certainly indicated, they are not sufficient to detect tumors which may develop between visits. Breast self-examination is a vital preventative healthcare strategy which may be employed by all women over the age of twenty. The American Cancer Society recommends that women of average risk in their twenties and thirties have a breast exam performed by a qualified clinician at least every three years, and that women over forty receive this screening annually. Cure rates for tumors detected in initial stages of development approach 100%.

Considering the invasiveness of pelvic examination and difficulty often experienced in gaining patient cooperation, controversy exists regarding the necessity of cervical screening (Pap smears) and pelvic exams for individuals with intellectual disability who are not sexually active. However, the risk of death from breast cancer compared to death from cervical cancer in the general population is approximately 7:1, and women with intellectual disabilities experience this same risk. Additionally, women with intellectual disabilities frequently experience nulliparity, a factor associated with as great as a four-fold increase in risk of developing breast cancer.

Family members and/or staff caring for women with intellectual disabilities have a crucial role to play in ensuring that women are either educated concerning breast self-examination and capable of performing BSE themselves, or receiving BSE monthly from a qualified individual. There are a variety of materials available (including materials targeting women with intellectual disabilities), both written and multimedia-based, which are designed as instructional tools to teach women effective BSE. Follow the links at the bottom of this document for more information.

Mammograms are an important diagnostic tool in every woman's preventative healthcare regimen and are recommended annually for all women forty years of age and over. This recommendation holds for women with developmental disabilities. Unfortunately, access to preventative healthcare services such as mammograms is often decreased for women in this group.

Routine pelvic examination, including Pap smear for cervical pathology, is a very important preventative healthcare intervention for all women, including those with developmental/intellectual disabilities. Some controversy exists among healthcare providers as to whether routine Pap cultures are medically necessary in individuals with developmental and/or intellectual disabilities who are not sexually active. Until sound research indicates otherwise, all women should receive routine pelvic exams including Pap smear. The American Cancer Society recommendations for frequency of such exams vary depending on the age, risk factors, and healthcare history of the individual. See the American Cancer Society website for more information at


For an excellent multimedia (audio and video) demonstration of BSE click on http://www.komen.org/bse/

For professional and personal instructional modules on BSE see MammaCare at http://www.mammacare.com/

For links to more information on multimedia programs to teach preventative healthcare to women with disabilities see http://www.fpg.unc.edu/~ncodh/WomensHealth/index.cfm


American Cancer Society Guidelines for early breast cancer detection. Retrieved 2/14/2007 from http://www.cancer.org/docroot/ped/content/ped_2_3x_acs_cancer_detection_guidelines_36.asp

American Cancer Society detailed guide: Cervical cancer. Can cervical cancer be prevented? Retrieved online 2/14/2007 from http://www.cancer.org/docroot/CRI/content/CRI_2_4_2X_Can_cervical_cancer_be_prevented_8.asp.

Davies, N. & Duff, M. (2001). Breast cancer screening for older women with intellectual disability living in community group homes. Journal of Intellectual Disability Research, 45(3), 253-257.

Thierry, J.M. (2000). Increasing breast and cervical cancer screening among women with disabilities. Observations from the CDC. Journal of Women's Health & Gender-Based Medicine, 9(1), 9-12.

Sullivan, S.G., Glasson, E.J., Hussain, R., Petterson, B.A., Slack-Smith, L.M., Montgomery, P.D., et.al. (2003). Breast cancer and the uptake of mammography screening services by women with intellectual disabilities. Preventative Medicine, 37, 507-512.