Recovering from cancer can be a long road for anyone, but for the 24 percent of patients who have to travel more than an hour for treatment, it's not just a metaphor.
"With many rural treatment centers closing, more patients are traveling farther for care. Data shows these patients are paying more, Medicare is paying more, and they are more likely to be hospitalized," UAB oncologist Gabrielle Rocque MD said.
Rocque has been studying how access, cost and quality affect outcomes in cancer care. One of her papers, published in the Journal of Clinical Oncology, found that Medicare data showed that longer travel distance correlates with greater expense and a more difficult recovery.
She has also found that the people who are most likely to develop a disease, who have more comorbidities that could complicate care and who take more medications that could interact, are also often less likely to be represented in clinical trials.
"There is a tendency to recruit participants who are younger, healthier and take fewer medications which can skew results," Rocque said. "They also tend to be overwhelmingly Caucasian.
"When your patient is underrepresented in trials, it's hard to make decisions on what the best treatment plan is for him. Is this the right medication and the most effective dose? Do the guidelines for care apply to them in the same way they apply to a different patient population? There is a serious data gap and we need more real world information to make good decisions for our patients."
Rocque has been studying these issues for several months, analyzing data from CancerlinQ and Flatiron. She hopes soon to have gathered enough evidence to make recommendations on how information that applies to different populations can be made available to health care providers.
"One of our previous studies looked at whether following guidelines-based treatment plans improved outcomes," she said. "The answer was very much yes. When physicians don't have much real world data that matches their patient, they might, understandably, tend to be more conservative. However, that may not be the best answer. When you are working with a fragile elderly lady and know how difficult aggressive chemotherapy can be, you may be inclined to prescribe a lighter dose. But research shows lower doses don't work very well. The data now shows that you give your older patient a better chance of survival if her treatment is as aggressive as that of a younger patient."
Defining a problem is only the first step in solving it. However, a better understanding of what is happening can suggest possible solutions.
"When we saw that distance and travel time were contributing to disparities in costs and outcomes, we started looking at our resources to see how we could change that," Rocque said. "It seems that a likely reason distance correlates with more hospital admissions and more intensive care is that patients are reluctant to travel a long way to solve a problem when it is small. They tend to wait until it becomes serious. For example, someone with nausea may become dehydrated, but they don't want to drive two hours for nausea. However, they can quickly become very ill.
"To head off this problem, we get patient navigators involved. Either lay navigators or nurse navigators build a relationship with patients and let them know what to expect and what to do. They call to check with patients to see if they are having nausea, transportation issues or other problems that they can help solve.
"It also helps to build relationships with providers in outlying areas. Instead of driving all the way to Birmingham, our navigators and medical team may be able to refer them to a local hospital ten miles away for a simple IV to deal with dehydration.
"Telemedicine, home health and home palliative care are also good ideas for improving outcomes and the experience for patients who live at a distance. When we identify and define what we can do better in treating cancer patients, we can begin moving toward making that happen."
