Jan 30, 2015 -
Health disparities are differences in the incidence, prevalence, mortality, and burden of diseases that exist among specific population groups distinguished according to age, gender, race, ethnic background, and socio-economic status. Cancer disparities can arise from dissimilarities in access to care, tumor biology, or host factors such as obesity. They particularly tend to occur in disadvantaged groups.
I had the pleasure of being invited to the NIH Scientific Program Leaders Retreat in Bethesda last week, with my section featuring the NCI Community Oncology Research Program (NCORP), and more specifically how NCORP is the perfect vehicle to study and hopefully eventually decrease cancer disparities. I certainly enjoyed presenting to NCI Director Harold Varmus (only minimally diverting to a discussion of the high altitude sleep tent I am using to prepare for the Mt. Kilimanjaro climb), discussing SWOG past efforts in studying disparities, as well as our and some other Research Base plans to research these differences over the coming decade. For us, this work will take place largely under the auspices of our Cancer Care Delivery (CCD) Program.
SWOG's history in health disparities research
SWOG has a particularly productive history, in terms of conducting health disparities research. One early example was an evaluation of clinical trial accrual rates by demographic factors. We found that women and African American patients were fairly represented across our treatment trials when compared to their rates within the cancer population, but that older patients were dramatically underrepresented. This study was subsequently published in the NEJM and provided crucial evidence for an IOM report that itself became the basis for Medicare changing its policy in 2000 to cover the costs of routine care in clinical trials. More recently, we examined clinical trial participation patterns by socioeconomic status (SES), which was a challenge given the traditional absence of patient level SES data in our treatment trials data sets. So we designed a web-based survey for newly diagnosed cancer patients and found that lower-income patients were uniformly less likely to participate in clinical trials. This held across all of the patient sub-groups we tracked. The implications here are that increased lower-income participation would speed trial conduct, improve generalizability, and promote fairness. We examined survival by race across a range of cancers. Among SWOG patients with uniform stage, treatment, and follow-up, we found that an increased risk of death for African American patients occurred only in the sex-specific cancers, suggesting that in addition to access-to-care, currently unrecognized interactions of tumor biological, hormonal, and/or inherited host factors may also contribute to differential survival outcomes by race in these sex-specific malignancies. Finally, we looked at the uptake in the use of docetaxel in treating castration-resistant prostate cancer. Docetaxel improves survival and is the standard of care in this patient population, based in part on SWOG trial S9916, published in the NEJM in 2004. We assessed the adoption of the new therapy by SES and demographic factors, and found that its uptake was significantly slower for older patients, black patients, and those with lower income or those in poverty. These results point to some clear opportunities to speed the uptake of new, trial-proven therapies in clinical settings that serve disadvantaged populations.
NCORP's future in health disparities research
From a rich past in disparities research SWOG looks ahead to an even more exciting future. Recognizing that patients are bearing more of the burden of increasingly expensive cancer therapies, we are working to develop studies that will assess disparities in the financial impact of cancer treatments, especially patient out-of-pocket costs, which we hope will allow us to develop strategies to mitigate the "financial toxicity" of some cancer treatments. In the belief that tools can be created to help patients reduce the financial impact of their cancer, we're designing SWOG S1417, a prospective, longitudinal survey of treatment-related financial changes patients and caregivers undergo. Led by Dr. Veena Shankaran, the study will give us a validated set of tools to assess a patient's financial health in real time. Our value-of-information (VOI) research is assessing the economic return on SWOG's clinical trials portfolio. VOI theory builds on the idea that research reduces uncertainty about what works and doesn't work for cancer, and this has economic value. Weighing the cost of trials versus this benefit is the central tenet of VOI work. Lastly, as care becomes more complex and prolonged, it becomes not only more expensive, but more of a challenge for patients to manage without dedicated support. So SWOG is assessing the role of various technologies -- such as smartphones -- and various media -- such as text messaging -- to help support patients and to, in turn, improve treatment adherence and outcomes. The other Research Bases also have interesting ideas, such as using patient navigation to improve resection rates in minority patients with lung cancer.
One of the primary challenges SWOG's CCD Program will face on the road ahead is moving beyond merely observing differences to intervening, in order to improve the quality of care for all patients and reduce healthcare disparities among sub-groups. We are lucky to have within SWOG exceptional resources that will help us achieve these goals. These include the superb leadership of our CCD Co-Chairs -- Scott Ramsey and Dawn Hershman -- and our CCD Statistician, Joseph Unger. They also include the only dedicated Adolescent and Young Adult (AYA) Committee among the adult NCTN network groups, an AYA Committee that is particularly interested in working with our NCORP members. Our greatest resource in achieving these goals is probably our NCORP members themselves -- the 26 SWOG-affiliated NCORPs -- six of them Minority-Underserved NCORPs -- comprising almost 500 individual sites altogether. NCORPs are an ideal venue for novel studies in Cancer Care Delivery Research, giving us a level of diversity in settings and populations that increases the generalizability of our results, and which gives us opportunities to learn how to rapidly implement research findings. NCORPs are a major priority area for the CCD Research Program, and a great strength within SWOG. We see them as a critical component of our future health disparities research and do truly believe we can make a difference in minimizing differences in cancer outcomes based on age, race, and socioeconomic status.
P.S.: I have a guest editorial in this week's Cancer Letter on just why I'm making my upcoming Kilimanjaro Climb for Cancer Clinical Trials.