The Hunt for Better Symptom Relief
In July 2002, a panel of experts gathered on the NIH campus to assess the state of the science on how clinicians manage the three most common symptoms of cancer treatment. The panel was disturbed by what it found. "Currently, cancer-related pain, depression, and fatigue are under treated and this situation is simply unacceptable," panel chair Dr. Donald Patrick, from the University of Washington, said at the time. "There are effective strategies to manage these symptoms and all patients should have optimal symptom control."
The committee meeting and resulting report marked a watershed moment for palliative care, says Dr. Ann O'Mara, a program officer in the NCI Division of Cancer Prevention. Palliative care, especially the management of symptoms of active cancer treatment, has become a burgeoning area of research. Current areas of investigation range from testing new treatments for nausea and hot flashes to how to more effectively use symptom management practice guidelines.
Although pain, fatigue, and depression have been studied most heavily, greater attention is now being paid to a range of symptoms, including sexual dysfunction, bladder inflammation, mucositis, hot flashes, loss of appetite, and sleep disorders. Through the NCI Community Clinical Oncology Program, more than 50 protocols are testing new agents for cancer treatment symptoms, including complementary and alternative approaches such as acupressure and mindfulness relaxation.
An area of intense investigation is the treatment of cognitive and psychosocial problems resulting from cancer treatment. Researchers at the Comprehensive Cancer Center of Wake Forest University, for example, recently completed a phase I trial using the Alzheimer's drug donepezil (Aricept) in patients who had undergone whole brain radiation and had three common cognitive function problems: slowing of thinking, short-term memory loss, and difficulty expressing themselves in language. The 24-patient pilot study, the results of which will be presented in November at the Society for Neuro-Oncology annual meeting, was an "overwhelming success," according to the study's leader, Dr. Edward G. Shaw. Patients had a dramatic improvement in energy level, decrease in depression and anxiety, and better memory and concentration.
"We were surprised at how dramatic the effect was and, of course, the patients were extremely pleased," Dr. Shaw says. "These people are now able to return to a more normal life."
"We have a lot of data on what the barriers are, and there are a lot of them," says Dr. O'Mara. They range from a lack of systems in treatment facilities and clinical practices for effectively addressing symptoms to poor communication between patients and physicians. "It's very clear that most clinicians don't ask patients about their symptoms," she adds.
"This communication breakdown is often exacerbated by physicians' limited time with patients and poor reimbursement for symptom management. Patients also are often reluctant to mention their symptoms to their clinicians. "They want their doctor to focus on their cancer," says Dr. Ann Berger, chief of the Pain and Palliative Care Service at the NIH clinical center.
With the release earlier this year of a request for applications (RFA), NCI launched an important new effort to eliminate or reduce some of these barriers. "With this RFA, we're asking investigators to design studies … that help improve the delivery of a particular standard of care for a particular symptom," Dr. O'Mara says.
Pain is a classic example of an area in need of improvement. Clinicians understand how to measure pain and have a better understanding of its impact on morbidity and mortality. "We also know that there are a lot of good therapies out there, but patients are still suffering from a lot of pain," Dr. O'Mara comments. In a recent study that involved more than 240 veterans being treated for both solid tumors and hematologic cancers, for example, the pain prevalence rate was 52 percent.
It's expected that some of the research generated by the RFA will examine methods for improving patients' and caregivers' understanding and use of symptom interventions, new models of care coordination, and novel strategies to improve symptom management in underserved populations. Some approaches may have an information technology component, such as a study currently being conducted at the University of Washington comparing outcomes between patients who receive usual care and those who receive care by clinicians using a computerized pain assessment and decision support tool.
As more data on optimal use of existing and new interventions become available, there is an obvious corresponding need the RFA is intended to address. "Hopefully," says Dr. O'Mara, "it will generate the kind of results that ensure more cancer patients get the symptom relief they need."