Patients with glioma can suffer from severe disease-related conditions, from neurocognitive deficits to epilepsy to loss of memory and concentration. Many of these can be treated. But patients can also experience the more general effects of cancer such as fatigue and distress, which may not be revealed on standard neuropsychological tests.
Now, a psychosocial oncologist says clinicians need to question patients about both types of adverse effects, by having patients fill out “generic” questionnaires that reveal the presence of symptoms not directly related to the disease, as well as neuropsychological tests pertaining to the disease.
“When you are testing patients it is important to listen to what they are saying,” said Neil K. Aaronson, PhD, Group Leader in the Division of Psychosocial Research and Epidemiology at the Netherlands Cancer Institute and Professor in the Department of Clinical Psychology at the University of Amsterdam.
Neuropsychological tests are very useful, he said, but so are patients' self-reporting about their quality of life.
Aaronson and colleagues conducted a study that found that neurocognitive deficits and epilepsy were relatively prevalent among patients with low-grade glioma and were particularly associated with negative health self-reporting (JCO 2011;29:4430-4436).
But the study also found that many patients with low-grade glioma are suffering with non-condition-specific symptoms.
A total of 195 patients with low-grade glioma, diagnosed an average of 5.6 years before enrollment, were found to have scored significantly lower than 205 healthy, matched controls on six of eight scales and on the mental health component score of the Short Form 36 (SF-36) Health Survey, which measures “generic” health-related quality of life, Aaronson explained.
Furthermore, one quarter of patients with low-grade glioma reported serious neurocognitive symptoms.
“Female sex, epilepsy burden, and number of objectively assessed neurocognitive deficits were associated significantly with both generic and condition-specific health-related quality of life,” he and his colleagues reported. “But clinical variables, including time since diagnosis, tumor lateralization, extent of surgery, and radiotherapy did not show a consistent relationship with health-related quality of life.”
Dismissive of Self-Reported Symptoms?
In a telephone interview, Aaronson said that some colleagues working in neuropsychological testing in cancer tend to dismiss self-reported symptoms as being unreliable, saying that these do not correlate with neuropsychological test results. But if there is a disconnect between the neuropsychological test results and what the patients are complaining about, then someone needs to probe to understand what is going on—”It may be complicated and thus it is not something one can dismiss cavalierly.”
The generic quality-of-life tests are typically used for general population studies or for chronic conditions and are not designed specifically for cancer, Aaronson said. “The advantage [of the generic health questionnaire] is that it enables one to compare the health status or self-reported health-related quality of life of a particular group of patients with their peers in the general population.”
Condition-specific health-related quality-of-life questionnaires are designed to focus on health issues, symptoms, and functional impairments that are specific to a condition. Breast cancer patients, for example, might have issues with body image or sexuality.
“We like to combine them, so with the generic measures we have the opportunity to compare results with some benchmark, and at the same time, with the condition-specific measures, to drill down to the issues that are particularly salient for any group of patients,” he said.
He said it is intriguing that not only in brain cancer but also in other areas where neuropsychological problems emerge, that there is a disconnect between self-reported cognitive complaints or symptoms and objective test results from neuropsychological test batteries.
Although there is a lot of debate over what that means, it is known that in breast cancer, for example, women who receive chemotherapy report neuropsychological functioning and cognitive problems, but there is no correlation between self-reporting questionnaires and objective test measurements. “My take is that the self-reported symptoms are what we should be more interested in because those are reflecting problems of daily living,” he said. “The neuropsychological tests may be capturing problems that do not necessarily translate into limitations of daily living.”
When symptoms are very severe, there can be questions about the reliability of self-reporting, but that is precisely why only patients with low-grade glioma were included in the study and why patients with very severe cognitive problems were excluded.
“The results of this study indicate that low-grade glioma patients are reporting health status that is significantly lower than their peers in the general population,” Aaronson said. “These days more and more patients are receiving chemotherapy, and what you see in clinical trials is that the effects in the short term are quite acute; patients tend to rebound from those but there may also be long-term, residual effects.”
Whether patients are treated by neurologists or radiologists, and even if patients are in remission, it is important to administer questionnaires periodically, he said.
“It doesn't take a lot of time to monitor how patients are doing over time with self-reports, and, where appropriate, to offer them any range of rehabilitation services available. I am a strong advocate of routine monitoring of patients' self-reported health status as an additional piece of information that clinical oncologists can use in taking care of patients over a longer period of time.”
A neurologist asked to comment on the paper, though, said that a well-conducted and frank face-to face discussion by the neurologist with a patient is more likely to uncover underlying problems specific to that patient than any other form of structured testing.
And incorporating such tests into routine clinical practice would also be challenging given time and personnel constraints, said Antonio M. Omuro, MD, Assistant Attending Neurologist at Memorial Sloan-Kettering Cancer Center and Assistant Professor of Neurology at Weill Cornell Medical College.
“Quality-of-life questionnaires can be complementary to neuropsychiatric tests, but they may not be not a full picture of everything that's happening with the patient,” he said. And while “quality of life is a very important aspect of brain tumor patients' treatment, it is very difficult to study, given the large heterogeneity in terms of tumor location, size, use of anticonvulsants, chemotherapy, radiotherapy, etc.”
Omuro said he agreed that objectively measuring subjective parameters related to quality of life is very important from a research standpoint, whether or not they are disease specific, such as in defining the impact of one given treatment versus another, or measuring the efficacy of potential new interventions on a population level.
Aaronson responded to Omuro's comments in an e-mail message: “It is not uncommon for clinicians who have not yet had experience with having patient-reported outcome (PRO) data available to them in their daily practice to be concerned that it is impractical to introduce these types of assessments in the routine of the clinic, and that it is better to determine what is bothering the patient most by talking with the patient during a clinical consultation,” Aaronson said.
But “in fact, there has been a good deal of research done, including a number of controlled studies, that have demonstrated that the routine introduction of PRO or quality-of-life assessments in daily clinical oncology practice facilitates doctor-patient and nurse-patient discussion of the patient's symptoms and functional limitations.”
Importantly, he said, this does not lengthen the average time of clinical consultations. He said a number of hospitals both in the U.S. and in Europe are now introducing PROs in their clinics, and are working on incorporating these data into electronic patient records as well.
“Of course, the introduction of any new technology into the clinic carries with it some start-up problems, but I am convinced that the availability of PRO data in daily clinical practice will facilitate better communication and ultimately better patient care. It is not intended to replace a good interview with a patient, but to be a complementary source of information that hopefully will further facilitate such interviews.”
A spokesperson for the National Brain Tumor Society in the U.S) agreed with the paper's conclusion, that administering both quality-of-life questionnaires and cognitive status questionnaires would be best in terms of improving patients' quality of life.
“If you ask cognitive questions and questions about living with disease, patients could get the support they need in the treatment center,” said research officer Mary Lovely, RN, PhD. The quality-of-life test can be self reported, “and it doesn't have to be long—not the two- to three-hour test—but patients do need it.
“It is important that this article showed that decreased cognitive status and epilepsy were the two major issues that decreased the quality of life for patients with low-grade glioma,” Lovely said.
She said that if a patient with epilepsy and a history of seizures is treated properly, the patient's quality of life will be increased: “The more information the health care professionals have about how the person is doing the more they can develop a treatment plan.”