Focus On Research September 2012
Focus on Research:
Improving Disparities in Cancer Screening for Adults with Disabilities
By David Buckley, MD
Mary Campbell (not her real name) is a 64-year-old woman recently diagnosed with breast cancer. She had not received a mammogram for four years prior to her diagnosis (the recommended interval is every two years). Although she can walk very short distances with the use of a cane, she needs a wheelchair to get around most of the time.
Women with physical disabilities are less likely than women without disabilities to receive screening tests for early detection of cervical, breast or colon cancer. They are also more likely to have cancers diagnosed at a more advanced stage. Women with more severe physical limitations may be less than half as likely to be screened, and the figures are worse for those who live in rural areas. The prevalence of disability in the U.S. has been estimated to be between 12.5% and 20.1%, so these differences in screening constitute an important disparity in the receipt of cancer control services.
We know that screening for certain cancers is effective – it reduces morbidity and mortality from these diseases. So, this disparity is really a question of effectively implementing the recommended screening. A number of potential and actual barriers to cancer screening for adults with physical disabilities have been identified, including physical accessibility to facilities and transportation as well as attitudes and awareness of healthcare personnel. However, few studies have been conducted in the primary care setting, where the majority of cancer screening takes place or is initiated, and fewer still have examined the effectiveness of interventions to improve cancer screening services for people with physical disabilities. One area of my research has been to better understand the underlying causes of the problem of disparities in cancer screening among people with disabilities in the primary care setting and to develop and test ways to reduce those disparities.
The first challenge to understanding and solving this problem is very basic, which is not to say simple. There are many existing measures of disability, developed for different purposes or contexts, but none for understanding which elements of physical functioning are important for receiving primary care. Current theories view disability as specific to an individual’s participation in a given activity (e.g., cancer screening), and dependent on the interaction of both an individual’s functioning and the environment (physical, social, policy) related to that activity. So, how we think of and define disability can make a big difference in understanding connections between physical limitations and cancer screening. To address this challenge, my colleagues and I conducted a study in the Oregon Rural Practice-based Research Network (ORPRN), in which we found that a standard measure of disability (“activities of daily living” or “ADL”) did not correlate with clinicians’ and staff members’ perception of patients’ physical limitations relevant for cancer screening. There was a clear need for a measure of disability that captures the aspects of functioning that make a difference in the primary care setting. Our next step was to learn more about barriers and facilitators to care, including cancer screening, from clinicians, staff, and patients with disabilities. We conducted 16 focus groups in four rural communities and primary clinics, and after analyzing the results of that study we developed a new disability screening instrument. The second iteration of this instrument is being validated against an ADL measure in a study conducted this summer at the OHSU Family Medicine South Waterfront clinic.
Our ultimate goal is to find practical ways to reduce the screening disparity. In related research, we have worked with ORPRN and the Multnomah County Health Department to develop, test, and refine two interventions designed to improve the receipt of cancer screening for adults with physical disabilities. One intervention is a workshop for women with disabilities, designed to provide skills to assume an informed and active role in their cancer screening. The other intervention is for clinics and is designed to raise awareness of barriers to cancer screening encountered by women with disabilities and to motivate clinics to make changes to overcome barriers. The two interventions address the complementary elements of the Chronic Care Model. Beginning in December, we will conduct a two-year pilot study in partnership with ORPRN and Oregon’s Centers for Independent Living to look at the combined effect of the interventions. This study will provide required sample sizes for a larger study of refined interventions to be conducted in multiple practice-based research networks (PBRNs) across the United States – a study that should produce results applicable to many primary care settings and help improve cancer screening for adults with disabilities.
Note: I would like to recognize my many colleagues in this research, including Patty Carney, PhD; Melinda Davis, PhD; Elizabeth Jacob-Files, MA; Elena Andresen, PhD; Gloria Krahn, PhD; Charles Drum, PhD, JD; Rie Suzuki, PhD; Jana Peterson, PhD; and Kurt Stange, MD, PhD. Funding for this research has been through the American Cancer Society, the National Institute on Disability and Rehabilitation Research, and OHSU’s Clinical and Translational Science Award from the National Institutes of Health/National Center for Research Resources.