Primary malignant brain tumors are not very common—about 9,000 patients diagnosed per year—and are associated with a poor prognosis. Treatment of these patients varies greatly among academic and community centers and can be in conflict with accepted guidelines of care, according to a new study.
Findings are reported in the February 3 issue of The Journal of the American Medical Association (JAMA) in an article titled “Malignant Glioma Patterns of Care.”
UCSF Medical Center neuro-oncologist Susan Chang, MD, lead author, says the information gathered from this study will be of substantial benefit to both patients and physicians. The study surveyed close to 800 patients over a two-and-a-half-year period at 52 clinical sites throughout the United States and Canada.
“Our goal in neuro-oncology is to improve the duration and quality of survival of our patients,” Chang says. “Providing up-to-date information on the treatment of these patients is very important and a major challenge. Specialists in the neuro-oncology field communicate well with each other, but we need to partner with other healthcare providers, including emergency physicians, primary physicians, neurologists and oncologists in the community, so that the optimum care is provided.”
The researchers found that the use of some diagnostic tools and treatment such as magnetic resonance imaging (MRI), radiation and surgery were consistent. But the study also found that fewer than 70 percent of patients who participated in the survey received chemotherapy, despite research findings that it is a useful therapy for brain tumors.
Other findings also raised concerns, according to Chang. Eighty-nine percent of brain-tumor patients received anti-convulsant medication, yet only 31 percent presented with seizures.
“While it is accepted that patients who present with seizures should receive anti-epileptic drugs (AED), there is strong evidence that prophylactic AED have little value for seizure-free patients with newly diagnosed brain tumors,” the researchers write in the JAMA article.
“Furthermore,” they write, “AED are associated with significant side effects, requiring changing medication in up to 23 percent of patients. The American Academy of Neurology’s practice parameters state that prophylactic AED should not be administered routinely in patients with newly diagnosed brain tumors and should be discontinued in the first postoperative week in patients who have not experienced a seizure.”
Chang notes that depression can be prevalent in people with brain tumors, but only a small number were prescribed anti-depressant medication.
But for Chang, the biggest concern is the small number of patients who participated in clinical trials. “Patient participation in well-designed, well-conducted clinical trials enables us to answer questions about the value of new therapies with the hope of improving survival rates. The systematic evaluation of new treatments also prevents the widespread use of unproven, potentially toxic therapies. We need patients to participate, but only 15 percent of patients do. We need to look closely at the barriers to clinical trial participation.”
Study results also showed a large number of patients used alternative medicine. “We found that more than two times as many patients take alternative medicine than participate in clinical trials,” Chang says. “Alternative medicines are chemicals and they can have interactions with other medications. Patients and their physicians need to keep that in mind when assessing symptoms and side effects of medications.”
Chang hopes that the data gathered in this study will be used as a point of reference for further investigation. “This kind of patient-centered database is rare,” she says. “I hope in five or 10 years we can conduct a similar study and use this original work as a benchmark.” She adds that with more research and education, she hopes that results for brain-tumor patients will continue to improve and that numbers for survival will look quite different in 10 years.
In conjunction with the JAMA article is a patient page that outlines types, symptoms, diagnosis and treatment of brain tumors. In addition, the page lists support groups and other resources for patients, their families and their physicians.
“The patient page is very consumer-friendly,” Chang says. “Patients, physicians and the community will find it a useful resource.”
The National Brain Tumor Foundation, cited on the patient page, often refers new patients to survivors who can help them cope with their situation. Scott Norris, a patient Chang’s who lives in Phoenix, is a six-year survivor who counsels other patients, and he understands the need for educating both physicians and patients.
“Doctors in community settings aren’t presented with brain-tumor patients that often, and I think that’s one of the reasons they don’t always have the best information,” Norris said. “I’ve talked to patients right after surgery who’ve been told they have a year to live, so it’s understandable why they get depressed, and I really think that can have an effect on their outcomes.”
Norris added that while he doesn’t want to give people false hope, patients need to become empowered and seek out the best treatment available. After his surgery at El Camino Hospital in Mountain View, Calif., he was referred to UCSF Medical Center where he received radiation and then a gamma knife procedure. He now undergoes an MRI at UCSF every six months.
Chang hopes that the research presented, along with the patient page, will be a useful tool for anyone who is faced with dealing with a brain tumor, from primary care physicians to patients and their family members.
Along with Chang, the authors of the study are: Ian Parney, MD, PhD, and Mitchel S. Berger, MD, Department of Neurological Surgery, UCSF; Wei Huang, MS, and Frederick Anderson, Jr., PhD, Center for Outcomes Research, University of Massachusetts Medical School; Anthony Asher, MD, Carolina Neurosurgery and Spine Associates of Charlotte, NC; Mark Bernstein, MD, Division of Neurosurgery, University of Toronto; Kevin Lillehei, MD, Department of Neurological Surgery, University of Colorado; Henry Brem, MD, Department of Neurological Surgery and Oncology, Johns Hopkins University; and Edward Laws, MD, Department of Neurological Surgery, University of Virginia.
The Glioma Outcomes project was supported by unrestricted educational grants from Aventis Pharma and Guilford Pharmaceuticals to the Center for Outcomes Research, University of Massachusetts Medical School. The study was also supported in part by a National Institutes for Health, National Cancer Institutes grant to UCSF.