By Alanna Kennedy
Left in the Lurch
An overlooked patient group is not receiving the care it needs
By Alanna Kennedy
When cancer researchers and patient advocates talk about health care disparities, they commonly discuss the underserved needs of groups such as ethnic and racial minorities, older adults and underinsured patients. But we don’t often hear about people with disabilities, even though there are an estimated 54 million living in the United States.
A recent study has helped highlight this problem. Published in the November 2006 Annals of Internal Medicine, the study concluded that breast cancer patients with disabilities are, in fact, receiving unequal cancer treatment. The findings may seem shocking—yet to those who work with the disabled, they are anything but.
The study authors, who analyzed data from the Surveillance, Epidemiology and End Results (SEER) program, found that breast cancer patients with disabilities were 20 percent less likely to undergo breast-conserving surgery than women without disabilities. The study also found that those who did undergo breast-conserving surgery were 19 percent less likely to have lymph-node dissection, in which doctors remove some lymph nodes from under the arm and examine them to determine if cancer cells have spread there. Moreover, these women were 17 percent less likely to receive radiation therapy after their surgeries.
The study researchers weren’t stunned to find that women with disabilities receive a different level of care from other women—for instance, that they’re less likely to have breast-conserving surgery, says study co-author Ellen McCarthy, an epidemiologist at Beth Israel Deaconess Medical Center in Boston. Still, she says, “We were surprised to see a lack of radiation and lymph-node dissection, because they are generally standard treatment” after breast-conserving surgery.
There are many reasons that breast cancer patients with disabilities don’t receive the same care as other women. One reason is that aspects of the disability itself can complicate treatment, says health services researcher Lisa I. Iezzoni, a professor of medicine at Massachusetts General Hospital in Boston who is the study’s senior author. For example, some women have disabilities that prevent them from getting onto the radiation table. Iezzoni stresses that doctors and hospitals must make provisions for these patients. For these women, hospitals could have a lower table, or someone to help move them onto the table, says pediatric oncologist Margaret Giannini, the director of the Department of Health and Human Services’ Office on Disability.
According to Judi Rogers, an advocate for those with disabilities and a breast cancer survivor with cerebral palsy, another problem is that health care providers lack necessary knowledge about caring for patients with disabilities. “In the 30 years between my husband and daughter going to medical school, the way disability is taught in medical school hasn’t really changed,” she says. If doctors aren’t taught how to treat people with disabilities, they won’t know how to do it, she says. Adds Giannini, “Physicians generally find it very difficult to approach women with disabilities.”
Classes taught in medical school should include a focus on health disparities, including disabilities, agrees Florita Toveg, a patient advocate from Breast Health Access for Women With Disabilities, a nonprofit program at the Alta Bates Summit Medical Center in Berkeley, Calif.
And education shouldn’t stop there, according to Giannini. “There is a great deal that must be done in terms of medical education of not only doctors, but nurses and other health care providers.”